Spotlight Story Program: Meet Asia-Jorden Alexander-Smith

Even one simple tweet can add such a level of flavor and dimension in your life. That’s something that we learned from our latest Spotlight Story Program feature writer, British graphic designer, Asia-Jorden Alexander-Smith when we saw her viral tweet about ASOS using a model with a hearing aid on their store. Since then, Asia continues to use her voice sharing her journey living with Usher Syndrome and raising awareness for the hearing loss and visual impairment communities, while also just living her life as an awesome young adult. In her feature, Asia shares her health journey and how she conquers her world by finding what makes her confident leading with honesty. Plus, learn how surrounding yourself with a dynamic support network makes you a legend and Asia’s five pieces of life advice as a self-confessed non-expert. We are here for it!

Hi! There’s a very good chance you have no idea who I am, so let me introduce myself – My name’s Asia. I’m a 23 year old graphic designer from the lovely county of South Yorkshire, England. I have two older brothers, 11 tattoos, and a cat called Harvey. Oh, and a condition called Usher Syndrome.

Back in 1998, newborn hearing checks didn’t happen so it wasn’t until my 7-month check that doctors noticed something was awry with my hearing. I failed my follow-up auditory brainstem response test, leading to the diagnosis of a severe bilateral sensorineural hearing loss. I was given two hearing aids at 11 months old and pretty much sent on my merry way to get on with my life as the only deaf person in my family.

Until I was 19, things were relatively straight-forward with my health – routine hospital appointments, hearing tests, new ear-molds, rinse and repeat. It was by no means easy, but it was a level of stability that I’d adapted to and accepted as a part of my life, a huge factor of the very foundation of who “Asia” was.

One weekend, I thought I’d got some dust in my eyes as I started to notice a bit of shadowing – almost like a cobweb – in the centre of my vision in my right eye. After leaving it for a few days, I was sent to A&E by my doctor to get it checked out. I was eventually dismissed by an A&E doctor and told that I had posterior vitreous detachment (PVD), which apparently was nothing to worry about and I should only be concerned if the floaters seemed to suddenly get worse.

Which, of course, they did.

I can’t lie, the testing process was grim. I’m a person who had never had eye drops before in my life and suddenly I was having ten sets of various eye drops within the space of a week and a half. I’m claustrophobic, and I had to stick my head in a little box and stare at a bunch of flashing lights whilst having electrodes literally touching my eyeballs so the doctor could measure my brain activity (an electroretinogram and visual field test). I felt like some kind of lab rat being poked and prodded and honestly, it sucked.

After countless trips back and forth to various hospitals to see various ophthalmologists, I was diagnosed with Usher Syndrome Type 2, a genetic disorder characterised by deafness accompanied by Retinitis Pigmentosa. RP is a progressive eye condition which causes night-blindness, tunnel vision and, in advanced cases, loss of central and colour vision.

I remember being sat in the consultation room with my mum and my oldest brother and my heart just broke. I was told I’d never be able to drive because the minimum peripheral vision requirement was 120°. I had 10° of peripheral vision left, and I hadn’t even realised I was losing it.

I was 19 years old and forced to grow up so much faster than everybody else around me. For my whole life, I’d chased a career in graphic design and now I was being handed a visual impairment certificate, which felt very much like my dream career was over before it started. I thought I’d learned how to deal with my deafness but this? This was completely unfamiliar territory for me.

It left me questioning everything I thought I had figured out, my deafness included. I was starting to notice that I was now an adult, sitting in hearing clinics where I was the youngest person by decades, being seen by audiologists who didn’t seem to know how to deal with me with the same compassion I’d experienced in the children’s clinics.

However, as difficult and life-changing as the diagnosis was, it also came with a strange sense of relief and clarity; I wasn’t just clumsy, I literally couldn’t see the things I was bumping into because they were outside my field of vision. I wasn’t just a bit of a wuss for being scared of the dark; part of RP is night-blindness and let me tell you, being unable to see or hear in the dark can be pretty scary.

At some point after my diagnosis, I completely changed my mindset. I truly wish I could remember the exact moment but all I recall is a newfound appreciation for my life, the experiences I was having and the people around me.

My family and friends were so incredibly loving and supportive. I don’t think I’d be the person I am today if I didn’t have the amazing support network that I have around me. The support and help I have from those who love me mean that I still love going to gigs, and on days or nights out.

I go to the cinema. I go on holidays to places I’ve never been, because I know that not only is there someone there to support me along the way, but I’m confident enough in myself to ask for help if something isn’t accessible enough for me.

That support network only grew as I delved more into the world of social media. I’d never really been part of a deaf community growing up, so when I posted a little tweet about a deaf ASOS model that I’d noticed, I definitely didn’t expect the incredible reaction it received.

People were messaging me to thank me for bringing it to their attention and for increasing public awareness. People were coming to me with self-esteem and confidence issues around their own disabilities and asking for advice.

photo from info.trendwatching website and copyright belongs to them and original photo from ASOS

Now, I definitely wouldn’t call myself an expert by any stretch of the imagination but just knowing that I potentially helped even one or two people within their own lives as disabled individuals? It’s truly humbling.

There are so many amazing little communities on Facebook, Instagram, Twitter – whatever your social platform of choice is. You might have the most supportive family and friends in the world but sometimes you need people who know how it feels to be in your position.

While we’re all different, even with an identical diagnosis, there are countless people who just… understand.

I’m now an auntie to six nieces and nephews, the youngest of whom has the same hearing loss as me. I want him to grow up feeling supported and completely unstoppable, regardless of his hearing.

So, my advice as a self-confessed non-expert?

  1. Stand your ground. A doctor can tell you technical stuff from a medical perspective but ultimately? They’ve read about it. You’re living it.
  2. Surround yourself with supportive people. You are never alone. I can’t promise that you won’t encounter people who don’t understand, or are perhaps just downright ignorant, but for every one ignorant individual, there are countless others who want to support and empower you.
  3. Be honest. Be honest with your doctors if you feel like something isn’t right, or if you don’t understand all the technical jargon that’s being hurled your way. Be honest with your friends or family if you’re just too drained to do that thing you were supposed to do. Be honest with yourself and those around you if you need a bit of help and support.
  4. If you need something, ask. Don’t feel bad about asking for something to be made more accessible for you. You’re entitled to the same experience and level of service as anybody else!
  5. Be proud. There’s only one of you in the world and that makes you more special than you’ll ever know.

Who am I today?

My name is Asia, and I’m 23 years old. I’m still a Graphic Designer. I laugh at things that I probably shouldn’t. I cry, a lot (usually at films!). I’m a resilient, occasionally funny, incredibly sarcastic young woman. I have Usher Syndrome Type 2, and you best believe I’m proud.

Spotlight Story Program: Meet Lauren Perry

Finding your community, building your network, and boosting yourself up. These are all things that our latest Spotlight Story Program feature writer has not only incorporated into her daily life, but has projected into her activism as she empowers other young people in the disability community. And that focus on connecting with others and becoming your own best advocate stems deeply into all that Brighton, England’s very own Lauren Perry represents in her life. Living with Tourette’s Syndrome and Ehlers Danlos Syndrome, 21-year-old Lauren has needed to create power, joy and success for herself while also dealing with the journey that chronic illness can complicate.  She’s been super proactive, using social media to create her own platforms that allow for meetups with others living with chronic illness in the Brighton area, and her virtual platform with her blog and Instagram page @aticcersguidetolife, that allows her to raise awareness, connect with others, learn how to advocate even better and share about her health journey. And she also shows off her cool wheelchair with pink wheels, a must-see! Lauren’s packed so much life advice in her feature about her young adult life with health struggles and being part of InvisiYouth’s Global Brand Leaders Program that anyone can gain tips.

Hey! I’m Lauren, I’m a 21 year old disabled student living in Brighton, England. I set up my disability blog and Instagram page @aticcersguidetolife with a hope to raise awareness on life with hidden disabilities, advocate for those who are unable to do so themselves and educate people on the wider issues disabled and chronically ill people face.

Updating friends and family on my health was becoming pretty exhausting in the early stages of my illness, but I wanted to make sure they all felt included in the process as I knew they genuinely wanted to know, so starting my blog was a great way to document my journey.

My health struggles started after a coccyx injury following a fall at work when I was waitressing, coinciding with laryngitis that wouldn’t go away and at the age of 17, I became incredibly unwell.

I was sleeping for days at a time and my body was not healing properly. I struggled to get through my A Level exams and got mediocre grades. I went from a high achiever who played in bands (saxophones, clarinet, piano), ran, went to the gym 4 times a week, swam, played hockey, and partied—to the girl who had to stopped working, slept all day, and was in incredible amounts of pain in a matter of weeks. And I’ve never been the same since.

The doctors blamed my mental health initially. I struggled with panic disorder and depressive disorder, however I knew this was different. The debilitating fatigue was different. At its worst, I was sleeping 28 hours at a time. I woke up for one hour to have a drink and slept for a further 15 hours. This sleeping pattern continued till the moment I had carers at 20. I’ve had countless misdiagnosis’, painful scans, frustrating results and random symptoms- chronic illness is a journey .

Having a disability in my late teens, I noticed quickly how isolating that can be, particularly as a university student. It seemed that although there must be thousands of disabled students, I didn’t know any and I felt there must’ve been other people that felt similar to me.

I decided to set up ‘A little poorly- Brighton’ in 2019 after a year of being at university. We now have over 400 members in Brighton, England where I have founded an online community and we formed friendships and a support network for chronically ill people living in Brighton and Hove, along with their carers. Now, I regularly arrange meet ups where I have professionals run workshops such as cooking with a disability, accessing work with a disability, improving hospital experiences for chronically ill patients, self-defense classes, art therapy, just to name a few.

In addition to ‘a little poorly – Brighton,’ I also take great pride in my Instagram page and newly updated website. Accessibility is a topic incredibly close to my heart. Through my platforms, I strive to help people access the inaccessible world. InvisiYouth has inspired me to build confidence to make friendships online with people all over the world. The Pandemic has taught me that accommodations can be made for disabilities. Online learning has been incredibly accessible to me as a disabled student, I spent many months battling for more support

I started my health journey not truly identifying as a disabled woman and rather just a 17 year old girl. I saw myself with misdiagnoses and I didn’t feel confident or educated in disability. Doctors often say “I think you have this” and then leave you with so many unanswered questions surrounding this new potential diagnosis.

I’ve learned to laugh in the most unfunny moments, make the most out of bad situations and I have shown my mental strength and resilience is important above all. I think I’ve become incredibly calm. In situations where perhaps someone else may panic or be overwhelmed—for myself—relatively these things often feel ‘small’ and I’m therefore pretty good at staying calm.

I’ve sadly had to grow up a lot quicker than my peers, but I also think that I’ve become much more understanding of other people’s emotions and gained a level of emotional maturity as my priorities have had to shift being unwell.

My diagnosis list is ever growing. Tourette’s Syndrome hit me out of the blue at 19 in my first year of university. I lost my speech out the blue for two weeks when I was 20 following a hemiplegic migraine which replicated a stroke.

Nothing surprises me anymore.

Honestly, if you don’t laugh, you’ll cry and that’s the best way we’ve found to approach my illnesses. It went from “why me- it’s always me” to “only me, typical” making a positive out of a negative or light and laughter out of an awful situation is very important. As chronically ill people, we often joke that we are unqualified doctors.

I truly believe the sheer knowledge that having a chronic illness has taught me is fascinating and perhaps something I would not have delved into had I not become unwell. I like to consider myself a receptionist or admin assistant to my own body—I appreciate my disabilities for supporting my love of stationery and organization—I bet you’ve never seen paperwork as organised and colourful as mine!

As kids we always get told not to talk to strangers and to some extent, I agree. However, had I not found such an amazing online community through Instagram I wouldn’t have found InvisiYouth, its Global Brand Leaders Program, or other content creators with disabilities. I’ve spent hours messaging other people on the internet .

Speaking to people online is such a powerful tool in management of disability. I’ve found many of my consultants through Facebook groups. My Rheumatologist who diagnosed my EDS was recommended through a Facebook group. My sleep consultant was recommended by a few people on Instagram. My cardiologist similarly.

It makes me feel like there’s loads of people like me. People who just ‘get it’ but can also support me in my journey and answer any questions from the perspective of poorly people not just as medical professionals.

The feeling of bumping into people who follow me on Instagram brings me so much happiness. The few times I’ve been approached in the streets after my pink wheels have been spotted from a distance on days where I’ve been struggling or having issues with accessibility- it makes all the appointments and the hours of pain worth it.

In that moment you feel less alone and feel like what you’re doing is really important. It’s comforting to know when you have a weird symptom that your doctor has never seen before, that there’s someone on the other side of the world who has it too and has a little bit of wisdom that might help.

  • I suggest having a list of all our conditions, medication, allergies and care needs summarised to take to appointments is incredibly useful, it really helps save time in appointments too. I used to get really frustrated when I felt like most of my appointment was spent covering medical history and less on my current issue.
  • Don’t be afraid to tell doctors or medical professionals what you need! You are an expert of your own body!
  • Find your people- there are people out there for you, who will understand you, support you, and think like you. Put yourself out there! People will put effort in and people will make time if they want. No one is ever too busy for the people they want to see!
  • If you don’t laugh, you’ll cry.
  • You’re braver than you believe, stronger than you seem, smarter than you think, more loved than you’d ever know and twice as beautiful than you ever imagined

My main message to share: You can do anything you want to do. The world might not be built for disabled people, but if you find the right people and understand your own needs, you’ll be able to access the inaccessible!

Don’t worry about other people’s judgement for any step of your journey. You should be able to live life to the fullest and enjoy it like anyone else your age.

Not all wheelchair users can’t walk just like not all disabilities are visible. Society strangely seems to have taught us the opposite.

Accepting I needed to use a wheelchair in order to have fun/ live life as my peers do has honestly been the best decision I have ever made.

Spotlight Story Program: Meet Meghan Smith

April is National Donate Life in America, and it’s a critical time to raise awareness on not only to become an organ donor, but also to learn the stories of those that have received this lifesaving transplants. One of those receipts is Maryland native Meghan Smith, a marketing executive that has used Instagram for our favorite thing…raising awareness, changing misconceptions, and showing how awesome and fun life can be with any health struggles. After a few years of health issues, it was discovered Meghan had liver disease and was in need of a transplant. Luckily, her uncle was a match to donate a portion of his liver! Meghan is such a transparent advocate because she shares the realness of post-transplant life, and all the medications and adjustments you make in life to adapt and excel. There’s no singular way to look or live as a young person with health struggle, and Meghan–who’s now a Donate Life Ambassador–is using her growing platform to give a fresh look on how incredible , fun and fulfilling life can be!

My name is Meghan and I am a 29 year old from Baltimore, MD. I work as a marketing executive for a global affiliate marketing company, and in my spare time enjoy traveling, reading, shopping, playing with my dog and spending time with friends and family. Growing up, I had a fairly normal and typical childhood. I lived in the suburbs outside of Baltimore with my mom, dad and younger brother, was active in dance and softball, and was generally healthy.

When I was 19 years old, I was studying at the University of Maryland when I started to develop abdominal pain and severe itchiness. I spent most of my college years going to different doctors trying to figure out the cause. Finally, at 22 I met a doctor at Johns Hopkins who determined the issue was caused by my liver. Around this time, my younger brother was 19 and started developing similar symptoms. For whatever reason, his liver disease had progressed much faster and he was in liver failure with liver cancer. He was listed for liver transplant and thanks to the generosity of one of my dad’s previous co-workers, received a living donor liver transplant at the age of 21.

I continued to be monitored by my hepatology team, and while numerous genetic tests were done to try to figure out the cause of our liver disease, there was never a match. In August of 2019 it was determined that it was time for me to be listed for liver transplant. Numerous people kindly reached out about being tested to be my donor. My uncle was the first person to undergo testing, and surprisingly he was a perfect match! It is very rare for the first person to be tested to be a match.

On December 10 2019, I received the amazing gift of a second chance at life thanks to my uncle donating a part of his liver to me.

Overall surgery and recovery went very well for the both of us. I spent two weeks in the hospital and was able to go home on December 24th, just in time for Christmas.

Unfortunately, two days later I developed an infection and had to be re-admitted to the hospital. Because my brother had gone through transplant before me, I was aware that transplant recovery is a process full of ups and downs along the way.

Once I was released from the hospital, I continued to recover and adjust to my new post-transplant life. This included taking a large number of medications multiple times a day to avoid rejection and infections, monitoring my vitals every day, and getting blood work multiple times a week.

I gradually built up to walking more often and getting out of the house more frequently. I was able to return to work at the end of February 2020 on a part-time basis, working up to full-time over the following months. I am incredibly lucky to work for a company that has been so supportive throughout my entire transplant process, and makes the health of their employees a priority.

Post-transplant I became a Donate Life Ambassador to help educate others on organ donation and encourage them to register to be an organ donor.

I’ve found that there are still many myths and misconceptions around organ donation and it is not discussed nearly enough, especially within my age group.

Almost 114,000 people in the United States are currently on the waiting list for a life-saving organ transplant, and on average 20 people die a day every day from the lack of available organs for transplant. I’m one of the lucky ones who received a transplant, and am inspired to help make the waiting list smaller and smaller until it is eventually 0.  

I’ve been using Instagram as a platform to share my transplant story and educate others on what it is like being an immunocompromised person during the COVID-19 pandemic. I think it is helpful to see that while someone may look “young and healthy” this may not always be the case, and to put a face to the people whose lives can be saved from following social-distancing measures and flattening the curve of the spread of coronavirus.

Throughout my transplant and now the COVID-19 pandemic, I’m often asked how I remain so positive given the circumstances.

My answer is pretty simple – I do what I can to protect myself and keep myself safe, but don’t worry over the things that are out of my control. I would offer the same advice to anyone who is feeling anxious during this time of unprecedented illness and uncertainty; do the things that have been recommended – wash your hands, stay inside as much as possible, practice social-distancing – but don’t let the thought of contracting the coronavirus consume you.

Take comfort in knowing you are doing everything you can to protect yourself and others, and use this time to practice self-care, pick up a new hobby, or do something you enjoy.

 

Founder Dominique’s Blog Presents … Podcast Master Class Miniseries

September 8th, 2020

It’s not an understatement to say 2020 has been anything but calming or as-planned. Rather it gave room for quite the opposite emotions.  A global health pandemic resulted in many being in quarantine, especially those that are immunosuppressed like myself in the chronic illness and disability communities. As we all have transitioned to being home—many working or studying from home—and we enter the last quarter of the year, lots of people have been searching for new content to bring a boost of energy into their days. Streaming TV series, finding those books we ‘haven’t had time to read’ and adding more fun activities have become part of our new daily regime. And what’s one thing that has been considerably boosted during quarantine and new hybrid work-from-home/schooling-from-home models?

Finding new podcast series to binge or jump into listening!

When the quarantine hit the InvisiYouth HQ of the NYC area, it definitely rocked our nonprofit’s team and we had to not only reevaluate a lot of our programs and plans for the years ahead, but also had to switch to all things virtual and work-from-home. When our video podcast series, InvisiYouth Chat Sessions, had to be put on hiatus (and we just started our third season, so we cannot wait to get back into film-recording!) we switched to creating an Instagram Live miniseries that ran for almost four months!

If you haven’t checked out the InvisiYouth Quarantine Coffee Break miniseries, you must do so ASAP as some of our episodes are on our IGTV.

But something we were thankful for was a project we actually started last year that is all about our love of podcasts and the incredible hosts that lead them! Seeing the wonderful impact podcast shows can have on the young adult community has made us want to highlight some of our most supportive and loved hosts, but also let them share their advice for this generation!

So many of you have asked us what it takes to start a podcast, the advice that we have gotten from our different empowered special guests on InvisiYouth Chat Sessions, and what are some of the dreams that many podcast hosts have for their future shows and community. We wanted to give you advice and tips to podcasting, some life lessons these hosts have gain from their guests, and give you an opportunity to learn more!

I am so excited to share these five incredible podcast series and their wonderful hosts!

Plus, at the end, I’m also going to give you some of the most memorable moments from the InvisiYouth team as we look back on all our episodes of InvisiYouth Chat Sessions.

Please give a listen to all these podcasts, and make sure to subscribe to them too because their shows are so much fun!

Uninvisible Podcast, hosted by Lauren Freeman

Website        Spotify       Apple Podcasts       Instagram        Twitter       Facebook

• What’s your podcast’s description/all about? 

A: Uninvisible Pod is a show about chronic and invisible illness – from the perspective of patients, caregivers, and practitioners across the spectrum of healing modalities.

• What inspired you to make this podcast? 

A: Like so many others in the Spoonie community and beyond, I got inspired…when I got sick. In 2017, I was diagnosed with Hashimoto’s disease and sleep apnea; I’ve also lived with depression and anxiety since I was a teen. I’d been working in the women’s health activism space, and it shocked me how many people in my network started coming out of the woodwork with thyroid disorders and various invisible conditions – that we’d NEVER talked about – when I went public with my news. My background is in acting and voice work – so it felt incredibly natural to give these enlightening conversations a platform, or a soapbox, if you will – by way of recording them. And I haven’t looked back!

• What is a favorite or memorable episode so far?

A: Too many – these episodes have become so personally meaningful and fostered amazing new relationships that have enriched my life in so many ways. I definitely fangirled HARD over Ilana Jacqueline (ep 43), laughed out loud with Karyn Buxman (ep 37), and learned amazing things from Sascha Alexander (eps 25, and 19) and Ariel of @carpe_that__diem (eps 40 and 41… but perhaps most meaningful to me have been the episodes when longtime friends allowed me to help them share their stories. Because of my interviews with Katie Georgiou (ep 10) and Dr. Harold Kraft (ep 7), Katie’s been offered free treatment for her MS and will be here in LA receiving it by the time this writing goes live; my friend Dayna Schaaf has been my rock, and decided to join the Spoonie club with an undiagnosed condition she talks about in ep 8; and one of my oldest friends, Clare Stafford, talked about surviving breast cancer – twice – in her 30s! – in ep 44. Also – my friend and former America’s Next Top Model contestant Mercedes Shorte (ep 1) was not only my first subject on the show…but also the first interview I recorded! Having InvisiYouth founder Dominique on the show (ep 18) was also an amazing experience. Her story is…WOW! This show is the best kind of rollercoaster!

• What’s a piece of advice you’ve gained from a guest on an episode? 

A: I always ask my guests for tips, so there are a lot of great answers to this question. But I think my favorite is: be open to trying something new – start thinking outside the box. This also means – seek second opinions, ask questions, and know that there is hope. Be curious, and be prepared not only to learn from yourself – but to be surprised.

• What’s something you’ve learned from being a podcast host?

A: Not a single one of us is alone. It doesn’t matter how complicated or weird or taboo or tough your condition is – you’re not the only one out there. Even with a super rare disease. There are others like you – you just need to look for them.

• What’s some advice you’ve gotten to pass along to new podcasters?

A: Have fun. At the end of the day, this is an investment of your time and resources – so make sure you’re finding joy in it. But also: be a responsible host. Ask the tough questions. Take the reins. Dig deep. It’s your journalistic duty in a post-truth world.

• If you could set a dream episode for your show, who would be part of it? What would it cover? 

A: JAMEELA JAMIL! She’s my Spoonie hero…but also I want to be her best friend! Not only is she blazing trails because of her outspokenness, but her relatability is exactly what makes her appealing. You don’t even have to be a Spoonie to dig what she’s about! I’d want to delve into the overlapping elements of invisibility not only in her experience as a WOC with invisible illness…but also those layers in the lives of individuals she’s met since starting @i_weigh, and how they’ve expanded her perspective. And I’d want to talk about the role of empathy in the future of healthcare, and how she sees that concept developing into…something, perhaps?…more functional for both doctors and patients.

 

Headcase Podcast, hosted by Stephanie Hoffmann

Website        Apple Podcasts        Spotify        Pippa        Instagram

•  What’s your podcast’s description/all about?

A: My podcast surrounds mental health, awareness and wellness. My goal is breaks down the boundaries of this taboo subject by diving deep into the world of mental health and all that relates to it. This show establishes real and honest mental health conversation through stories and discussions straight from the people who’ve experienced them. HeadCase’s purpose is to spread awareness and end the stigma by enlightening audiences on the lack of education, information and options for those who suffer through or are directly affected by it. HeadCase is the podcast you’ve been ANXIOUSLY waiting for.

• What inspired you to make this podcast?

A: What inspired me to make this podcast initially was a concussion I suffered that unleashed many side effects from beneath the surface. Primarily anxiety and depression and it stopped my life in my tracks and to this day is something I struggle with. I wanted a place where everyone could discuss whatever it is they’re going through without judgement, fear or hesitation.

•  Favorite/A memorable episode so far?

A: One of my most memorable episodes, although all of them are unique, would have to be the episode titles Sensitive to a Fault with Hannah Blum. It was the first time I got any real understanding of Bipolar 2 disorder and a raw explanation of of her experience in a mental institution.

• What’s a piece of advice you gained from a guest on an episode?

A: I’ve learned so much from all my guests. I think the main thing I gain is that no matter how bad things may seem or get, there truly is a light at the end, even if it doesn’t shine every day, doesn’t mean you give up on yourself or your life.

•  What’s something you’ve learned as a podcast host?

A: I’ve learned what it is to truly listen, not just hear. It’s made me a more empathetic person than I already was! And ongoing, I’m learning to speak better publicly.

• What’s some advice you’ve gotten that you’d pass along to new podcast hosts?

A: I would say, try not to talk over or interrupt your guest, pace yourself so you don’t step on your own words and be calm! Let your personality shine through that microphone— (which you should never have more or less than 4 inches from your mouth.

• If you could set a dream episode for your show, who would be on it? What would it cover?

A: I have so many dream guests I’d like to talk to. Lately, I’ve been noticing how active Justin Bieber has been in the mental health world and I’d love to hear his whole story as told from a real, raw and honest place that people may not have heard yet. Other guests I always think about having on are Jay Shetty, Russell Brand, Kevin Love and Pete Davidson. The list truly goes on but I’m thankful for all the guests I get because being candidly open is extremely brave, famous or not.

 

The Women Wave, hosted by Sterling Cates and Tricia Cleppes

Website          Apple Podcasts          Spotify          Instagram

  • What’s your podcast’s description/all about?

A: The Women Wave is a multimedia creative house that produces empowered content for women. At TWW, we encourage women to authentically connect and get involved in the world around them. In addition to an online community of women and IRL events, we have a weekly podcast that comes out every Thursday that covers everything from personal experiences, to politics, pop culture, and more. Each week, you can expect a bold, inspiring, and unfiltered conversation.

  • What inspired you to make this podcast?

A: The Women Wave came to be when we realized we weren’t the only women craving authentic conversations about our experiences. As long distance best friends in constant communication (bless you, FaceTime) about our lives and the world around us, we decided to make our private conversations public, creating space for other women to be just as vulnerable and supported. With so much going on right now, we figured we couldn’t be the only ones trying to figure it all out. We were right — and the best thing happened, now we get to do it with all of YOU!

  • What’s a favorite or memorable episode so far?

A: It’s so hard to choose a favorite because every week is so incredibly different! Over the past 106+ episodes, we’ve laughed (a lot), cried (a lot), and really explored topical stories in ways we didn’t know possible. One great thing about having this platform is we get to express our civic duty and rights, like protest and organizing. When there were families being separated at the border, we had a platform to spread awareness, research, and resources in the form of an emergency minisode.

On weeks where we may be traveling or can’t cover that week’s news, we’ll pre-record episodes where we take deep dives in to 1-2 topics or answer listener questions — which gives us a rare opportunity to dig deep, discover some gems and help our audience get to know us more. Here are a couple of our favorites. Do The Work (Episode 98) and No One Asked, We Answered (Episode 96).

  • What’s a piece of advice you’ve gained from a guest on an episode?

A: We have a bi-monthly series on our website called Women Making Waves, where we feature badass women who are playing active roles in making waves in their communities (which is how we connected with Dominique and InvisiYouth!). We have learned SO MUCH from each and every woman we’ve had the privilege of interviewing. We recapped some of the highlights on Episode 96, Lessons in Boldness from Women Making Waves. To point a quote out in particular, we refer back to this one a lot from Gender Equity Now’s Executive Director, Sara Sanford: “I’ve acted out of fear and I’ve acted out of bravery. I can’t think of a single time in which I acted out of fear that I would look back on and say, “I’m so glad I was timid. I’m glad I dimmed my light.” Whatever the thing is that you fear, it still comes for you. Wouldn’t you rather it came for you knowing you were true to yourself, that you had acted with integrity? Aren’t you coming out of that fire with your head held higher? I’ve endured consequences for being bold, and I don’t regret a single one of those decisions. If a job or a relationship doesn’t thrive in the midst of your strength, it means it’s not right for you; it doesn’t have enough to offer back to you. If you act boldly, you will find the people and the work that honor your strength – but you won’t get to that place by acting out of fear.” FIRE TWEET.

• What’s something you’ve learned from being a podcast host?

A: The nature of our podcast keeps us accountable for doing the work and doing the research. Each week we challenge ourselves by keeping up with the news and what’s going on in the world around us. It can be exhausting, yes, but ultimately it fuels our curiosity and desire to spark similar dialogue in our listeners own lives. We’ve also learned that vulnerability breeds vulnerability. By being willing to come to the table as we are, we’re creating a space for others to do the same. We’ve gotten so many wonderful messages from our community members who have similar stories or who were inspired to do something by something we said – and that’s an extremely humbling and motivating feeling. That connection keeps us going!

• What’s some advice you’ve gotten that you would pass along to new podcast hosts? 

A: Start. We didn’t have it all figured out when we decided we wanted to start a podcast – we just started. This whole thing has been through so many phases (#same), and ultimately hasn’t been the most by-the-book journey, but it’s been ours and it’s been beautiful. We are all works in progress, and that includes our expressions of creativity. Aside from that, don’t allow all the blogs out there to intimidate you – you don’t need the fanciest equipment or millions of dollars behind your podcast. You don’t need sponsorships to have a platform. If you’re committed to consistency and have a desire to use your voice in this way, just do it! And yes, do your research. 😉 Go in with a vision and a why. Our vision was to make our private conversations public. Why? We believe women are craving authentic connection and reassurance that they are not alone. Despite having gone through a rebrand and the natural evolution of this project, our vision and our why has never wavered.

If you could set a dream episode for your show, who would be part of it? What would it cover?

A: We sometimes lovingly say that our podcast is just a recap our Oprah’s Super Soul Conversations, so we think we’d have to say the obvious answer here: Oprah. There would be birds chirping as we sit with her on her Maui estate’s lawn. We would talk honestly about fear, resilience, purpose and the power of being a woman.  After we finish up she’d call Gayle and Stedman and we’d all make dinner using ingredients hand-harvested from Oprah’s famous garden. Then she would turn to us and say, “You know, after our interview today you’ve convinced me: I am running for President. Oh and also, you can live here if you want.” …Oh sorry, did we go too far?

In Visibility  Today, hosted by Laura Elliot

SoundCloud     Apple Podcasts    Patreon     Twitter Podcast     Twitter for Laura

  • What’s your podcast’s description/all about?

A: In Visibility Today is a (usually!) monthly podcast featuring an extended interview between me and another disabled or chronically ill guest, covering topics ranging from politics, culture, activism, art, and everything in between. The tag line is: sharing who and what’s visible in disability, and every month (my own health allowing), I aim to provide a platform for someone with a chronic illness or disability to share the work they’re doing within and outside of the community.

• What inspired you to make this podcast?

A: Before I became disabled, I completed my MA in Broadcast Journalism, so when I became housebound in 2016 one of the things I really missed was working in a radio newsroom. I decided to use the skills I still had to provide a platform for people like me to share their work and experiences outside of the mainstream media. As well as offering that platform, it’s also been a valuable way for me to learn about disability and chronic illness as a newcomer to this community. I intended the podcast to help other people learn about disability and other topics, and to understand that life doesn’t stop with disability, but actually, I think I’ve ended up learning more than anyone from my guests!

• What is a favorite or memorable episode from your podcast so far?

A: There have been so many it’s very hard to pick! Some highlights include speaking to Eugene Grant about compiling his own library of dwarfism history (his preferred phrasing), and interviewing Gail Ward from Disabled People Against Cuts in the UK, who have been fundamental in challenging the current government on the impact of their austerity measures on disabled people. I’ve also loved talking to author Lydia Ruffles about how chronic migraine lead to her writing her first YA novel, and writer and performer Sabrina Richmond about incorporating British Sign Language into her theatrical work.

• What’s a piece of advice you’ve gained from a guest on an episode?

A: I think the best piece of advice I got was from Sabrina, who spoke very eloquently about making autobiographical work, and the importance of defining how much of yourself you’re willing to share with an audience. She said she always tried to find that balance between honesty and vulnerability, and protecting her own privacy and the important parts of herself that aren’t for public consumption, by asking: will I still feel comfortable with this three months from now, when the adrenaline has faded and the work has already been shared?

• What’s something you’ve learned from being a podcast host?

A: I’ve learnt just how many incredible disabled people there are out there doing so much awesome work! Coming from mainstream media into a much more niche, homebound format has narrowed my focus, and it’s been a privilege to learn about various topics more in-depth than I’d ever have been able to do in a newsroom. Also, the importance of letting a conversation flow naturally, and not being afraid of the mic!

• What is some advice you’ve gotten to pass along to new podcast hosts? 

A: Try not to be too performative when you’re running the show. It’s tempting to over-compensate because obviously you’re relying purely on audio, but the best podcasts feel like being invited into someone’s living room for a chat, so just relax, and enjoy the conversation as you’re recording. Oh – and make sure you actually hit “record”!

 

• If you could set a dream episode for your show, who would be part of it? What would it cover?

A: I have two dream guests that I’d love to have on, and they are Frances Ryan, a journalist at The Guardian, and Jack Monroe, an author, cookbook writer, and campaigner in the UK. I’d love to talk to Frances about working as a disabled freelance journalist with a focus on disability rights and austerity, and how she manages her health and her investigative work. And I’d love to talk to Jack about their adaptive techniques cooking and writing, and their extensive knowledge of diet and health.

Made Visible, hosted by Harper Spero

Website       Apple Podcast        Spotify        Stitcher        Overcast        Google Play

Instagram for Podcast        Twitter for Harper        Instagram for Harper

• What’s your podcast’s description/all about?

A: Made Visible is a podcast that gives a voice to people with invisible illnesses. This podcast aims to change the conversation around invisible illnesses, helping those who experience them–whether as patients, caregivers, or friends or family members–feel more seen and heard. There’s no blueprint about how to live with an invisible illness, or how to be there for someone who has one. The goal of Made Visible is to help people living with invisible illnesses feel less alone as they strive to create a “normal” life, while also creating a new awareness of how we can be sensitive and supportive to people who are navigating these conditions. We never truly know what another person is going through unless we ask, listen, and do our best to understand.

• What inspired you to make this podcast?

A: I spent the first 27 years of my life hiding my invisible illness because I felt so much shame about it, and wanted to fit in. After undergoing a major surgery in 2012 where I could no longer hide my health, I started sharing my story and health challenges with friends and family and felt like I peeled off a layer that had been protecting me. Additionally, I started writing about it and found that my story and experiences resonated with others. But, as I searched for outlets and stories that were focused on invisible illness, I felt like I couldn’t always find content I related to. As an avid podcast listener, I decided to create the content I wanted to consume in podcast form. Thus, in July 2018, Made Visible was born!

• What’s your most memorable or favorite episode so far?

A: There are so many! I don’t play favorites. An episode I enjoyed was with Jaime Walden (Episode 56) who lives with Crohn’s disease. What I loved most about Jaime was that she didn’t hold back–she shared so much of her life, her health and the real struggles she faces while managing this illness…many of which are not so fun to talk about. She brought a lot of humor into our conversation.

• What’s a piece of advice you’ve gained from a guest on an episode?

A: Letty Cottin Pogrebin (Episode 30) talked about the importance of treating people like humans, not as patients. If you’re looking to support someone who is managing an invisible condition, it’s important to identify the things they love and how you can continue to make those things part of their life. Offer to bring them their favorite meal (or just show up with it!) instead of assuming they want soup.

• What’s something you’ve learned from being a podcast host?

A: I’ve been listening to podcasts for a while and when I started this I wanted to ensure that the content did not get stale. Over time, I have worked really hard to make sure I come up with unique questions, listen intently to my guests, and create diverse content so it never becomes repetitive. I never want someone to feel the way I have with other shows and get bored and stop listening.

• What’s some advice you’ve gotten you would pass along to new podcast hosts? 

A: Screen your guests in advance. Ensure they are media trained and good storytellers. Also, if you’re going through an assistant, publicist or manager, ensure the guest you’re recording with knows the premise of the show. This seems obvious but I’ve had a guest record and then ask me what the theme of the show is.

• If you could set a dream episode for your show, who would be part of it? What would it cover?

A: I have been watching Selma Blair’s journey with multiple sclerosis over the last year and am so thrilled to see her willingness to share so much of her day-to-day challenges. It’s important for people of influence to share their stories and help others know they’re not alone. I would love to interview her and talk about the process of deciding to share, how she chooses what she shares and when, and what it’s like to be a mother living with an invisible illness that’s becoming increasingly less invisible.

* * * * * * * * * *

Want to know another special addition to this epic InvisiYouth Podcast MasterClass Mini Series?? It’s my selection of some of my favorite episodes of InvisiYouth Chat Sessions!! And this was TOO HARD because we love something about every episode and each wonderful guest! But here are some of my MUST-WATCH and MUST-LISTEN episode from our podcast series!

Season One, Episode 14

For forever, my favorite is our tribute episode to my friend, and one of the best cystic fibrosis activists, Claire Wineland. I was planning with Claire her guest appearance for Season One before she passed away, and I decided to switch around and create a memory episode filled with Claire’s best YouTube moments. Highlight: getting to have Claire’s mom, Melissa, as the special guest because she’s one of the kindest souls I have met. It’s been two years since Claire passed away, and still to this day, I will watch this episode and feel the love Claire was always able to bring into the room.

YouTube        Apple Podcasts        Spotify        Google Play

Season Two Episode 26

Season Two ended with a dream guest, Diversability’s CEO and founder Tiffany Yu. In the early stages of InvisiYouth Chat Sessions development, we made a wishlist of powerful women in the chronic illness and disability space we’d love to have as a guest and Tiffany was on the top of that list. Her episode has an impactful discussion on the importance of good allyship and life lessons we still get comments about from people finding our series with E26.

YouTube        Apple Podcasts        Spotify        Google Play

Season Two Episode 24

Fun Fact: This episode is our most viewed YouTube video AND most popular audio podcast! And with the Kowlessars chatting about relationships with chronic illness, I know why! Anna (founder of People Hope) and her husband Randy have a a dynamic of fun, love, and passion that makes them guests you’ll be hooked to listen to from the first minute. I had the most laughs filming with them, and every listener will share this podcast to friends, it’s so good! Also BTS: we had technical difficulties and had to re-record the episode entirely again, so I got to experience two completely different episodes with Anna and Randy!

YouTube        Apple Podcasts        Spotify        Google Play

Season One Episode 7 and Season Two Episode 25

Our only returning podcast guest of InvisiYouth Chat Sessions is also one of my greatest friends and BOTH of his episodes are podcast gems! Cystic fibrosis activist, producer, and author Travis Flores brought two completely different tones to both episodes and that diversity makes him a standout guest. The friendship with me and Travis is such fun and clear in both E7 and E25 so you feel like you’re just hanging out with some new friends!

YouTube Epi7        Apple Podcasts  Epi7      Spotify Epi7        Google Play Epi7

YouTube Epi25        Apple Podcasts  Epi25      Spotify Epi25        Google Play Epi25

* * * * * * * * * *

When I decided to create this Podcast MasterClass, there were a ton of series that our team immediately mentioned that they were huge fans of too. It started when I began developing the premise of InvisiYouth Chat Sessions being the vocal point of our virtual programming. I was finding all these wonderful podcasts, hosted by these talented and diverse people and I was being inspired about the show I was creating for InvisiYouth Charity that I knew could hopefully become an addition to this list of shows I love.

And now InvisiYouth’s team has created our honorable mentions of top podcast picks.

*fun fact: I’ve been a special guest on some of these shows too!

Bit Different Pod        Chronic But Iconic        What Fulfills You?        Hey, Girl

Two Disabled Dudes     Call Your Girlfriend     Sickboy     The Gurls Talk Podcast

Disabled to Enabled    Point of Pain    Gentler Pod     This is Not What I Ordered

Please give a listen to all these podcasts that I am chatting about because they are AMAZING, their hosts are BADASSES, and I am a mega fan of all of them, and feel like I grow as a podcast host because of them too. Make sure to subscribe to their series, AND SUBSCRIBE TO INVISIYOUTH CHAT SESSIONS TOO too because their shows are so much fun!  We learn when we are open-minded, curious and eager to become better people, so when you listen to podcasts, you are truly getting to become a student again, be entertained, and feel that human connection. It’s why I love podcasting, and why I love that InvisiYouth Chat Sessions gets to be the focal point of our virtual programming. Lots of love!

~Dominique, founder and executive director

The Catch 22 of Illness and Disability Portrayals in Media: All Representation is Good Representation vs. Accuracy Only, Please

*repost from February 25, 2018*

When I get a rare bit of time to relax, I sometimes just want to put my feet up and watch some TV. And when those flashy, at times 100-level volume, commercials come on, my interest is usually only peaked when a new movie trailer popped on the screen . Well …trailers or one of my staple favorites commercials like the Swiffer commercials with Lee and Morty comes on for a good laugh. I always like to see what stories are being told in film, and what may be worth a watch. Whether I’m in need of a good laugh or cry, a love story or comedy, or some intense action–never a horror film since I’m too easily spooked–trailers are my swipe left or swipe right decider.

In the last couple years, I’ve noticed what feels like a push in films that have led characters and plot lines focused on chronic illnesses and disabilities. You would imagine I would overwhelmingly love seeing this, after all, I founded InvisiYouth Charity where I’m constantly pushing and motivating for equal representation. But as I watch these trailers, the feeling is mixed between a quick boost of excitement and a similarly immediate drop of frustration.

I feel flooded with a ping-pong of thoughts:

  • Wow, finally a film bringing a lead character with a rare, not main stream-known disease.
  • Are there seriously no disabled actors that can actually be hired to actually portray the actual illness or disability?
  • Representation is great for young adult health conversations and awareness!
  • Does every chronically ill or disabled person in a movie have to be the center of a love story of overcoming some massive life crisis? Can’t they just be a character with a storyline that happens to be sick or disabled?
  • It’s brilliant getting conversations going about young adults living with illness. They are just young adults like anyone else too.
  • These actors aren’t acting like an authentic sick or disabled person. Someone with that illness definitely cannot do that, it’s not true.

For me, it’s a Catch 22 scenario with my sentiments on what truly matters most: awareness or accuracy.  And maybe I maintain an overly positive mindset and believe that both are valuable, and try to find the best in what is coming out in the media. I want to believe that, while I have a ton of issues with the inaccuracy of portrayals and lack of diverse casting, there can be some good in this wave of films addressing characters with disabilities or illnesses, especially for the young adults that are watching them.  Just in the purity of having more people watching films showcasing lives lived by people with disabilities and illnesses; that while the health stories of these individuals may be more complex and unique, but their life stories are just like anyone else.  The more eyes we can get from them general public to see this community, the more understanding and change that can arise from it.

Photo Courtesy of IMDB

If no films were coming out with characters living with chronic illnesses or disabilities, then the ease in which people can talk about the health subjects diminishes. When I suggest to young adults talking with friends about their health struggles, I tell them sometimes it can help to show their friends what that daily journey is like.

And often, young people tell me they want to reference what’s sort of similar to their life and portrayed in the media, the films and TV shows they watch, with characters living with similar conditions.  

You can have young people tell their friends to watch the 5th season of Freeform’s THE FOSTERS because a main character, Jesus, is living with a traumatic brain injury (TBI), and the show is displaying an entire arc about the process of recovery personally, socially, academically and emotionally. Actor, Noah Centineo, and the writers, talked often about the preparation that went into bringing accuracy and justice to this plot line.

Then we go to another show, Canadian-born (and globally famous) teen TV drama, Degrassi, where so many different story arcs for decades showcase what various illnesses and disabilities could look like for teens.  From characters living with mental health struggles like depression and OCD, to illnesses like leukemia and cystic fibrosis, DEGRASSI prides itself on tackling topics that show diversity in all its forms. While hiring actors living with these health struggles lacks, Degrassi breaking stigmas to open the conversations in real life, to create more understanding, open minds and change.

However, a line needs to be drawn when it comes to this wave of media using characters with illness or disability to romanticize or dramatize the storylines.

Health struggles should not be a plot device to add more complexity to a storyline or character, because it reality, that is not how it works.  As someone living with an illness, I don’t get the luxury to “turn it on or off” when it suits the situations in my life…and there certainly isn’t any romantic background music playing when I have to tell people about my health struggles.  This is where accuracy completely disintegrates and it can tarnish an entire film, when these storylines lack realism.  So yes, while I can be happy for opening the door of conversation and normalizing the visibility of illnesses and disabilities mainstream, they are done so without accuracy. And that’s should not continue.

Last year, films came out and addressed lead characters living with disability and illness…but the characters and storylines where not only lacking in accuracy to the daily life of someone with that health struggle, but also the actors were able-bodied and healthy.

That inaccuracy may not be apparent to audiences not living with health issues, but for anyone living with any sort of illness or disability, the films and actors are like neon lights pointing out the wrongs.  With WONDER, while a beautiful storyline, it has an able-bodied character portraying the genetic disorder Treacher Collins Syndrome.

And with EVERYTHING, EVERYTHING, the immune-deficiency disease SCID, Severe Combined Immunodeficiency, is also portrayed by an actress not living with illness—and when this film was coming out, all over our twitter we saw reactions from the Spoonie community talking about the major inaccuracies of the illness portrayal and character lifestyle.  “It’s so unrealistic” I would hear youth say. What made it feel even worse was that a general audience would never notice the flaws and assume this is how relationships and life can look for any of their friends with illnesses or disabilities. Stereotyping the “illness lifestyle” is what continues to enable ignorance, lack of understanding and empathy for change.

Even a film that I enjoyed, THE FAULT IN OUR STARS, lacks realism and has two able-bodied actors without illness portraying osteosarcoma/subsequent amputation and Stage 4 Thyroid Cancer.  I enjoy the film and book as pieces of fictional storytelling. I love the love story of the two characters, the satire in which teenage illness is discussed among all the characters, because while not accurate at times, the tone is so similar to my outlook. I tell friends this movie has moments that are relatable to the experience, and it is a film that can get my friends to feel comfortable asking me questions about my health because of that.

In a way, films and TV shows that have what I call “the health struggle plot line” need to be used as talking points or references to help bring that de-stigmatizing conversation WITH A DISCLAIMER.  There needs to be a ‘fine print’ comment every time you want to use a film or character to reference…saying “well this character is living life with an illness similar to mine…yes, it’s not super accurate, but it can show you a bit of what that feels like for me.” I always use the disclaimer method, when using media and film to try and explain to friends what my relationships and lifestyle can be like, and that can feel disheartening because there’s so much in daily life I need to teach others around me as I adapt, I shouldn’t have to do this with film portrayals too.

In my opinion, it’s disheartening that in 2018, we still have to put a disclaimer to these storylines, that they cannot be made accurately.  And yes, let’s giving the benefit of the doubt because everyone’s experience with an illness or disability is different. Two people with the same diagnosis do not respond, treat, or adapt to life the same ways…so one portrayal in a film may match up exactly to my life, but not someone else’s with my diagnosis. That’s the way uniqueness in society works, so it’s all about finding common ground and working from there.

Look at a movie coming out next month, MIDNIGHT SUN, where the female lead is living with a rare genetic disorder, Xeroderma Pigmentosum.  Is it wonderful that rare diseases are FINALLY getting some screen time and going into mainstream films so more people can talk about it? Absolutely! But how much does it suck that the portrayal is by an actress without the illness, and the illness is romanticized, instead of realistically portrayed? A lot!

To see films using illness as a plot point for romance and drama, that is what needs to stop because it’s not realistic.  How about films just happen to have their lead characters living with an illness or disability, and something else causes the drama or romance to build? That would be interesting AND original…two things films are always looking to create.

But to me, what matters most, what it truly gets down to, is the lack of opportunity for actors with disabilities or illnesses to portray what is this life and journey accurately. So often, characters are developed for a film or TV show where they are designed to have an illness or disability and the actor that gets the part has zero connection to it.

They are not chronically ill or disabled and have to “portray” the role without any personal experience.  It seems so contradictory to not hire an actor with a disability to portray a character with a disability.  There are so many talented young people around the world living with chronic illnesses and disabilities that are actors and they should be the first choice for hire!  These individuals should be the ones on the casting list, and it’s for not just accuracy in the storyline, but also it continues to build inclusivity in the industry.

And even more disheartening is how true this is when it takes me FOREVER to come up with just a couple examples in my head of TV shows or films with accurate casting. It shouldn’t take much effort to list off accurately casted films or shows. When the industry says, “oh there aren’t that many actors to fill the need” or “it would be hard to assist or adapt to these actors” I have to call their bluff and say that’s such a ridiculous copout. Heck, our latest Celebrity Ambassador, Melissa Johns, is a British disability activist and actress, and she’s such a talented actress!

Look at the positives when a film or show are accurately casted. The Freeform show SWITCHED AT BIRTH, was centered around many characters that were deaf or hearing impaired (the actress Katie Leclerc who portrays one of the protagonists, Daphne, lives with hearing loss due to Meniere’s disease, an illness also given to her character). The variety of communication like American Sign Language, is a great example of how to integrate differences between those living with deafness or illness and those who do not. And bonus… actors like Katie Leclerc, Sean Berdy, Ryan Lane, and Marlee Matlin, have actual hearing impairments so it was accurate and inclusively casted!  The show feels even more authentic, passionate, and inspired because the characters are portrayed by individuals with the exact illness and disability.

Wouldn’t the film industry want to bring that much truth and emotion out of their audiences, bring that much notoriety and conversation and impact society enough to make lasting change?

I think it should, and that is the main point of contention in this international debate.

That is why I really want to believe in the positives of both seeing all this representation of illness/disability in films and TV, while also seeing the benefits of accuracy in storylines when illness or disability are being brought into the fold.

While you can either find representation or accuracy more important in films, what truly matters is that there needs to be more opportunity for actors with illnesses and disabilities.  There needs to be more roles written to portray this community, with requirements of accurate casting. There needs to be more opportunities for these fantastic actors to be hired to show their talent playing any roles, whether their illness or disability is the focal point or not.

My truest goal is that we can see films or TV shows that have actors with illnesses and disabilities on a regular basis, a true progression that needs to be made to show all the facets of societal diversity.

~Dominique

10 Year Throwback and Chronic Illness Memories

September 28, 2019

This blog post was originally written for our friends at Diversability! A big THANK YOU to Diversability for featuring me as a guest blogger. I am such a fan of this social enterprise that is truly reshaping the way #disability is discussed and how we can generate positive opportunities for the disabled community! You can read my article below,  OR make sure to check it out on Diversability’s blog page here, and like/comment!

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With 2019 coming to an end, it’s easy to feel like time is passing by quickly, and we can wonder if any of those goals or resolutions we set at the start of the year are coming together. That is an even larger concern when you are living with a chronic illness because there can already be some self-doubt of not achieving goals.

As someone living with chronic illnesses, I understand how we put this pressure on ourselves because there’s an immediate fear our health setbacks will be the demise of our goals.

After my tennis injury igniting my chronic illnesses almost eleven years ago now, I worked so hard to find the balance of striving for success while maintaining my ‘new normal’ of health.

But as the years continued, I felt the ‘what ifs’ creep into my mind. That worry if I would be more successful or happier if I never got injured and had the subsequent health constraints that are sometimes part of my day-to-day.

But something quickly happened that turned my mentality on its head.

I discovered a young adult chronic illness advocate YouTuber, someone that would become a friend and future philanthropy supporter of InvisiYouth Charity. In one of her advocacy videos, she mentioned she only started to feel a sense of serenity and accomplishment in her life when she took the negative stigmas of “chronic illness life” out of her mindset.

After watching, it was as if a light bulb went off and that guilt I put onto myself seemed so obsolete.

Why was I judging myself for things I couldn’t control?

Why was I automatically assuming if I had to adjust my goals for life, I was ruining my dreams?

Why did I look at my dreams as out-of-reach because they weren’t going to be on the same timeline as my “healthy/able-bodied” friends?

This is the truest fact for life with chronic illness/disability, and has become one of the major pillars of InvisiYouth’s mission: a life with chronic illness and a life of success/happiness ARE NOT mutually exclusive.

I can live every day with my chronic illnesses AND still be happy and successful. My life goals aren’t lesser than just because my health isn’t the stereotypical norm.

There is a framework in the media and society that if you have a chronic illness or disability, people must feel either sympathy for your struggles or inspiration by your daily act of just living. 

It is that negative connotation that causes us as the chronic illness/disability community to view our goals as harder to reach.

And while yes, there are certain things I cannot do any longer because of my health, that doesn’t mean I cannot adapt.

That doesn’t mean I cannot take a few more steps and add a bit more time to still achieve my dreams.

One of the best life lessons I’ve learned is somewhat of an analogy to cooking. Life shouldn’t be a shot in the pan, it should be a slow burn, allowing all the flavors of our goals to marinate.  We don’t need instant gratification, or a microwave fast-track to achievement.

We don’t need to scale our wins in life based on what others can achieve. Let your goals and dreams take their time to reach their full potential, and when you get out of that negative mindset and become proud of your life WITH chronic illness/disability instead of being angered by it, that is when serenity can be found.

So now, as I look at all my goals–personally, professionally, and with InvisiYouth Charity–for the end of 2019 and going into 2020, I won’t look at the unmet goals with sadness or worry, but instead, I will let it fuel my fire to figure out new ways to adapt my steps and continue moving forward.

Spotlight Story Program: Devri Velazquez’s Story

Meet Devri Velazquez

Our latest Spotlight Story comes from someone we’ve adored for over a year now.  She’s not only got one of the best Instagram aesthetics we’ve ever seen, but she also has found a real niche for combining artistry with health activism. It is beauty and wellness editor and writer, Devri Velazquez.  Whether she is in Texas, New York City (where our founder, Dominique got to meet her), or Chicago, Devri has maintained her constant push for awareness on the life of a becoming an adult while living with chronic illness, specifically when you’re becoming your own person with invisible illness.

At 20 years old, Devri was diagnosed with a rare autoimmune vascular disease called Takayasu’s Disease. This is “a rare type of vasculitis, a group of disorders that cause blood vessel inflammation. In Takayasu’s, the inflammation damages the aorta—the large artery that carries blood from your heart to the rest of your body—and its main branches. For Devri, it took a series of strange flu-like symptoms and within a few weeks, her diagnosis was found.

Like thousands of the InvisiYouth community, Devri was diagnosed as a young adult, and that is a time in life when you are still discovering so much of who you are, and where you’d like your life to go.

I was 20 when I was diagnosed, so I feel like I had to grow up and mature soon than a lot of people I knew,” Devri said. “I had to quit taking certain risks that young people around me weren’t anywhere close to stopping. I take my self-care seriously, as my life depends on setting healthy boundaries.”

This is an experience that so many older youth have to deal with when maintaining their friendships while taking care of their health needs.

Self-care needs to be a requirement when you’re living with chronic illness instead of just a personal motivator.

Devri’s health journey has absolutely not only shaped the way she lives her daily life, but also how she does her work as a writer and editor on beauty and wellness, which everyone can experience on her website.  “I live and breathe survival everyday, in the places I go and the people I meet,” she said. “This is my lifestyle, learning everyday how to cope with constant pain that fluctuates by the hour. I pour my heart and passion into everything I do because I try not to take a single moment for granted.

Living with chronic illness takes so much daily energy, so when you’re able to achieve your goals, there is an extra large dose of enjoyment that can be felt. Like Devri points out, it completely alters the way you adapt to each and every day based on how your body is feeling and what you are capable of doing. And while that could be a focus of negativity at the challenges life with chronic illness presents, Devri is also able to see how her diagnosis has also given her new perspectives on life.

I always knew I was strong, but this has made me feel unbreakable. Nothing on this Earth and no person’s words or actions could ever hurt me as much as my body does on a daily basis, so I have learned to be more open-minded to a lot of things and not take certain situations as seriously. Everything is temporary, nothing is permanent, so relish the good moments, and know that the bad ones will pass.

There is so much to get empowered with from Devri’s mentality on her health journey. She’s right: no external factors in life can be as damaging as chronic illness is to your health, so you are actually a lot stronger than you think. Devri makes such a fantastic point: when you are having bad health days, you need to remember everything is temporary and with inner strength and willpower, you can to push those bad health days.

This is something we definitely get to experience through Devri’s social media activism on her Instagram account. Another trait of Devri’s that we all adore at InvisiYouth Charity is her complete vulnerability and belief that by sharing her medical journey, she can not only help others but also learn and grow herself.

Vulnerability is something that has help me accept and embrace the illness that my body carries,” Devri said. “I don’t feel defined by it, but it’s a part of my story now, and I’m not ashamed. I’m actually pretty proud of how well I carry this burden. Being open to your community—family, friends, colleagues—is so important, for your own mental health as well as their understanding and compassion in your journey.

What Devri touches on a couple of critical factors every young adult with chronic illness needs to know.  First, is the understanding that we are never defined by our illnesses or disability, but rather they are part of our description. Our health is not who we are, but rather it is part of the way we view our life and world around us, and that is not anything we should be ashamed of.

Second, Devri mentions something InvisiYouth always promotes, and that is the fact that a support network is critical to our daily success in life. Our family, friends and coworkers/classmates, they are all the people that help us get through the bad days, and celebrate the good ones.

This amazing young woman is filled with knowledge, realness and motivation. Not to mention, some of the best writing and photography we ever see! So when we asked Devri what her main message in life for other with chronic illness would be, it is no surprise that Devri would give the best.

Be your biggest advocate,” Devri said. “Learn how to say ‘no’ with confidence. If something doesn’t feel right—an interaction with another person, an environment, a job—it is okay to walk away from it. Do what your gut instinct tells you to do, just trust it with everything and then respond accordingly. That’s your mind, body and soul aligning to work in the favor of your higher self.”

When You’ve Got Health Hindsight: My 10-Year Anniversary with Chronic Illness

December 30, 2018

Well hello again, long time, no blog! It has clearly been a while since my last founder’s blog, but that’s just because InvisiYouth Charity has been keeping me so damn busy. (*and if you’ve been keeping up with InvisiYouth, you’ve gotten to know the reason for that is our new video podcast series, InvisiYouth Chat Sessions, which I am the hostwhich will be continuing throughout 2019*)

So, let’s get real for a minute.

One thing I’m a firm believer in is to always celebrate your small victories, and especially while you live with chronic illness/disability. You should be proud of all you achieve, regardless of the scale. But one of our volunteers reminded me of a milestone I just reached—10 years since the injury that caused the snowball of chronic illness into my life.

I’m aware it may see odd to celebrate my chronic illnesses. And yes, they really did take my life from me while my illnesses were a daily torture, but living with health struggles has also given me a life, a new normality, that I am incredibly proud of. While that’s my optimism trying to stay in focus, I refuse to stay in a mindset of resentment for my life.

As a resident “oldie” of my illness for a decade, I wanted to share my hindsight of life with chronic illnesses and the top 10 things I’ve learned after these 10 years:

#1 Diagnosis Won’t Be a Magic Wand, But It Sure Feels Nice

This is probably one of the biggest things I’ve gained hindsight on, while also being the most controversial.  It took me years to get proper diagnosis, years with mistreatment that could have improved my now-quality of life, but there’s something anyone that reads my work will notice. I rarely write down my diagnoses, and there’s a reason. Still to this day, I have had diagnoses given to me and taken away, some putting “undiagnosed” in front new diagnoses in my medical charts while others were certain. I used to put so much pressure on getting the name, getting the diagnosis and THEN I would be able to go through recovery and my new way of living. I wanted some claim of community for what I experienced. But even when I got one, it didn’t change much for me.  I still heard from doctors “well, this isn’t an illness we can cure, so we can just help you cope with it.”  The longer I lived without diagnosis, the longer I realized that it would not ‘fix’ what I was experiencing in my daily life.  Now yes, I am very aware some illnesses have amazing treatment which you get from a proper diagnosis, and that a diagnosis can really validate the patient experience because it allows them to belong and justify their health struggles. But for so many, the diagnosis isn’t the “cure it” pill, but rather the name we get to identify with. In hindsight, I learned that a diagnosis was less of a magic wand, and more of an identity helper and validation tool. I know I relate to a few different chronic illness communities, and my doctors are doing all they can to help with my health’s symptomatic issues, so a word doesn’t hold as much weight to me anymore.

#2 Celebrate the Small Daily Wins, Not Your “Literal” Falls

So often, we focus on what our bodies limit us from doing, what our chronic illnesses have taken away from our lives.  And that Negative-Nancy mindset can do a lot of damage on your emotional wellbeing when all your mental energy is focused on what goes wrong in your day and your health. When one thing goes wrong, it can feel like a domino-effect, or in my case, my own literal falls (since that tends to happen a lot). But when you’ve lived with a chronic illness for years, you gain a retrospective mindset because you’re able to look back on the periods of bad and good health. It makes you realize that if you celebrated those wins, all those days—or even hours—of stable, good health, then you’d be able to feel achievement and pride.

You’d be able to realize the focus of your energy is better served on those good moments, instead of all the setbacks and bad days.  I remember hearing the notion “every day may not be a great day, but you can find something great in each day” and that was what I began to live by a few years into my health journey.  Even if the best thing that happened was that I got out of bed, it was at least one thing I did well that day. When I gave full over-the-top celebration on each of my little wins with my health, it made my mentality more positive. It would start to feel oddly annoying when I had health setbacks because I wasn’t focused on the bad it caused in my life for most each year. The goal was to never give my chronic illnesses more power than they already had, so daily mini-winning parties for me.

#3 Become Your Best Researcher, Advocate and Nurse (knowledge=EMpowerED)

Knowledge is power. You need to be able to fight for your rights, for what you need to best help your life with health struggles.  So much was bounced over me, especially when I was a teenager and still a minor in the eyes of the medical community. That may have been the case, but it was still my body, my health, and my life.  I was lucky…my mom is an incredible nurse and has instilled in me the idea that no one will be a better advocate than YOU, so ask all the questions, inquire and research anything that may be done for you, and always get a second opinion on major medical decisions. I was taught how to advocate for my medical needs, how to research on the treatment options, to ask accurate questions, and have intelligent discussions with my doctors.  But this is not something everyone knows right when their health declines, it’s a trait to learn and sharpen.  With hindsight, I know that my health deserved my research and support to improve. I hear from lots of young adults that work with InvisiYouth “I’m the best researcher and nurse for my chronic illnesses, because I know my health and life better than anyone.”

#4 Reminiscing About the Past Can Hurt Sometimes

We can always learn from our past, but when you have a specific marker that defines “before I got sick” and “after I got injured” your past can feel bittersweet. I used to always focus on my past and feel like I wasn’t progressing enough with my health, that my chronic illnesses had done so much damage to my life.  And in a way, that could be true. The dream of playing tennis competitively on the pro-circuit died, my social network diminished, and my physical health deteriorated. But it didn’t mean I wasn’t still living my life or I wasn’t proud of the life I was building. So, when I constantly was looking at what my illnesses had taken from me, I was damaging my emotional wellbeing, and that began to hurt. My past with pristine health is something I love, and now I look at it with a great deal of fondness. But the way I’ve handled it is to look at it in those two separate parts: the before and after. If I stay in a mindset of “what ifs” then I lose my positivity, and that is not something I am willing to do. I have learned over the years since my injury, I have learned to have respect for all the years of my life, and to never feel bad or ashamed of my illnesses. By doing that, I don’t focus on what my past looked like, but rather how I have strengthened into the woman I am, how I’ve become more empathic and how I have been able to thrive in my life. I focus on the now, while giving importance to the past and future when it relates to my memories and my dreams, or my medical history, of course!

#5 Let Yourself WallowBut You Only Get One Hour

People have this ideal notion that you’ve got to be happy all the time. That if you feel sadness as a direct effect of your chronic illness/disability, you are not fighting hard enough for your health. I started to feel like I needed to be positive, to always find the goodness in my struggles, because people were “inspired” by my inner fight and “motivated” by my positive outlook.  And while that is true, that is because I let myself grieve my old life and feel for the literal pain and discomfort I have each day.  I can be strong and positive because I know when to let myself feel bad.  With a decade of chronic illness-life under my belt, I can see it was a great decision to let myself wallow for all my chronic illnesses have pained me. But what I learned is now the advice I give: allow yourself time to wallow, but make sure it only maxs out at one hour. I give myself this time limit for a reason.  If I let myself continue to feel bad about my health struggles, it will fester and to climb out of that depressive dark hole is a huge challenge. But you should be allowed to experience all the emotions of life with health struggles. You are a human being and that spectrum of emotions deserves to be felt. It is something that has worked so well for me because I allow myself to feel all the sadness and mourning and pain that is physically tortuous on my health, but I never let it overtake me.  Sit in your emotions, but know you are in just as much control of your life as your chronic illness/disability is of your physical health. When I realized my own strength, but also allowed myself to feel bad, it allowed that positive mindset to shine, so let that positive focus to thrive be your superior emotion.

#6 Be Fearless to Help Yourself in Public. You Won’t See those Judgy Strangers Again

To this day, my friends will say they know the minimum about my health struggles—many of them not even knowing the extent till they came to InvisiYouth fundraisers or my public speaking engagements. But that decision was because I was always a private person, and never felt the details needed to be shared.  I relied on the invisible nature of my chronic illnesses so it would never be the first thing people noticed about me. But when my symptoms and health struggles expanded into the physical, everyone would notice, feel pity, or ask prying questions. After a couple years of worrying about what others thought, I spoke with my mom and she got real with me. “Why are you worrying about people’s opinions? You never see them again, and it’s just stressing you out unnecessarily.” I flipped a switch and stopped caring about the wandering eyes and whispered comments. We’ve got lots to worry about with chronic illness, so worrying about what other people are judging us for when they pass by should NOT be on the list. They are strangers and not substance to what makes you who you are. And let’s get real…even I fall victim to worrying about what others think on occasion.

Recently, I went into NYC for a brunch with this lovely British blogger while she, her older brother and her boyfriend were celebrating her brother’s birthday. At that time, I had to use a cane and on my commute, I used it and got lots of stares that it didn’t faze me. But the moment I got to the restaurant, I put the cane away to make sure they did not know my medical status. I hid the cane in my bag, suffered the few steps to our table and back outside without these three new friends knowing anything. And the second I was out of sight, I grabbed my cane. Even I have moments of self-doubt, but I don’t let them define me. I could have used my cane in front of them (her brother has one of the same chronic illnesses I do) but for that 20% of my day, I concealed my reality. That is okay…because 80% is greater than 20% and I made it a point to use my cane for all my meetings, family gatherings and shopping trips in the days after. Because I am fearlessly confident with my chronic illnesses, and moments don’t define a life!

#7 Even in the Hard Days, Just Try to Laugh Because It Helps You Cope

With InvisiYouth and in my daily life, I firmly believe that laughter is the best medicine. For me, I have truly seen the way my humor, or blunt sarcasm, has helped me cope with my chronic illnesses. When things get bad medically and you’re told your limitations, I found humor was not just a cushion from my harsh reality, but a way I could look at life.  Humor supports your emotions. And sometimes with all life can throw at you when you’re living with chronic illness, you just want to laugh so you don’t cry. But I also view laughter not just as literal laughing at my medical problems, but experiencing humorous moments too! When I wasn’t as mobile or active in my past, I would find TV shows, YouTube channels or movies that would make me laugh.  Even if it was as basic as TV show review podcasts, if it got me to laugh while my health struggles were tragic, then all was being done well.  Sometimes we need to take our chronic illnesses/ disability seriously, focus on how our bodies can manage hour-by-hour, handle new treatments or hospital stays. The need for humor in our lives should to be prominent too. How else can you handle diagnosis, setbacks and side effects unless you laugh at your bad days? In hindsight, I can easily say my dark humor is one of the largest factors that got me through my lowest lows, and got me to the stage of my new normal ten years later!

#8 Body Positivity ≠ 24/7 Body Confidence

It used to feel like such a challenge to remain confident about my body for a couple reasons. Firstly, I have a distinct “pre-illness” life I can remember before the injury. And I had a competitive athlete’s teenager physique, so there had to be a deep acceptance my body may never look that way again. Secondly, my health struggles are physically taxing, so I go from living with an invisible illness to an illness that morphed, damaged and scarred parts of my body. It’s literally painful to use my entire left side, and even though a decade into it, I’ve learned how to live this new normality with quality, it means I “workout to be in shape” more uniquely than most. But the truest way I’ve gained confidence with my body is finding an appreciation that it does work for me. I’m grateful when I can climb a flight of stairs because I remember when that wasn’t possible. I am the only one that must live in my skin, so if I’m not going to find my body beautiful, it won’t matter if anyone else does. So, I have learned over these 10 years to find confidence in the functional body I have to work with, instead of desperately desiring more toned legs or smaller hips and a slimmer face. And now, I have such a respect for what this body of mine is capable of, the battle scars I find sexy and the imperfections that make me the woman I am. This body has fought my chronic illnesses with me, and that helps with my body positive mindset.

#9 Ask for Help When You Need it and That Will Make You Stronger

How I wish I accepted this earlier! When I was in the early stages of health struggles, I hated asking for help. It felt like a defeat or failure. Like my hours of physical therapy, focus on treatments and doctor visits hadn’t worked and I wasn’t doing enough. But what took me years to realize was a simple fact: Even my friends without chronic illness/disability needed to ask for help at times. Now granted, my requests and needs are a bit more major and frequent, but looking back, I made my daily life harder than necessary to live without asking for help. I physically struggled walking and interacting in classes because I didn’t want anyone to know it was hard for me.

I strained my limitations to meet deadlines, which caused medical setbacks that left me weeks to recover.  But asking for help is not a sign of weakness, but rather, it is a sign of strength. You are so connected with your medical needs that you are willing to gain support to achieve goals. That makes you stronger than anyone because you know what your goals are and have passion to get things done, and those are signs of an independent and successful person. I started to become less afraid of saying “Can you help me?” or “Do you know how to adapt this to what I can do?” Word of advice: ask for help because you want to live your life with purpose, and while it’s totally normal to feel like you’re bothering people, realize each supporter will make you stronger.

#10 Don’t Fake Smile to Pacify Others. YOU are the Only One Living This Life

I could not have picked a better piece of reflection on my ten years of chronic illness life than this one. As I began to live my life with chronic illness longer and longer, my health became my identifier. I was no longer just Dominique, but the ‘sick’ friend. I wasn’t part of the conversation, but the full medical dictionary to the questions thrown at me. And the more I interacted with “healthy/able-bodied” people, the more I ‘put on’ a happy face. I felt guilty if other people knew how bad things were medically because it felt like they were going to start pitying me more too. I pacified others constantly being “the happy, strong girl with health struggles” who never complained and always said “it’s okay.” But the only person that it was affecting was me.  It was me who had to put extra energy into “feeling as healthy as I looked” and that wasn’t fair. I learned since I was the one person that had to live inside this body all year-round, I had to find ways to adapt to it.  And if my illness struggles bothered people, if my realness was too much, then that had to be okay, and they were not the right people to have in my life. Don’t hide how you are feeling from other people. Life isn’t perfect, it is multi-faceted and messy at times, and don’t make everyone around you comfortable when you are not. Live your life the way you want to live it. And the people that love and respect you, the people that are the most compassionate are the same people that will stick around during all your “faces of emotions” and will open their minds and hearts to empathize with your experiences.

When you were not born with a disability or chronic illness, 10 years of health struggles is a long time.  It takes up such a part of way you live and view the world and yourself.  And that lets you take a step back, and learn and appreciate all you’ve experienced. Dig deep and you will be proud of the thriving life you make for yourself with all its medical quirks and adaptations, trust me!

~Dominique

Spotlight Story Program: Sophie Ward’s Story

Meet Sophie Ward

When life brought health challenges into British 24 year old Sophie Ward’s life, ending her dreams of trying out for the 2012 London Olympics, she used her fighter athlete spirit to get to the bottom of her struggles. After a diagnosis of Lyme Disease, Sophie not only focused to improve her health, but worked around the UK with Parliament, on radio/television, and with her blog to bring awareness to Lyme Disease education and prevention. She’s a kind and passionate young women, inspiring others to find their inner empowerment. And as an InvisiYouth Global Brand Leader, Sophie uses her advocacy and philanthropic skills to bring positive change to our international older youth crowd. 

In August 2008, my family and I travelled to Beijing to watch the Olympics. Many of my friends were competing in the swimming events and my dream was to reach London 2012, so it was a perfect opportunity to soak up the atmosphere, support my friends and learn what to expect. Once the Olympics were over we decided after traveling all that way it would be silly not to sight see. So, we did! We were lucky enough to go to the Panda sanctuary and it was AMAZING.

Here is where my nightmare started. I began with a fever after seeing the pandas. I was treated at the time with 48 hours of antibiotics which seemed to do the trick.

On returning home, I was forced to give up my swimming career due to nerve damage after an umbilical hernia operation. I felt lost. The years went on and my health declined; weight loss was the result was increasing food intolerances, migraines, joint pain, muscle weakness, blurred vision, confusion, muscle pain, fatigue, insomnia, temperature sensitivities, itchy skin, rash, nausea and so on. There seemed to be a new symptom every week. I saw doctor, after doctor, after doctor. All of them passed me on to the next or called me crazy.

I was losing the will to keep fighting. Was I crazy? Was it me? My family questioned my health too. Sometimes asking me directly if I was the cause of my health issues and to ‘snap out of it.’ How could I ‘snap out’ of something I zero control over.

2017 began and after going to the hospital for food intolerance tests, the consultant suggested I  see someone who specializes in CFS (Chronic Fatigue Syndrome) as at lot of my symptoms matched. The consultant gave nothing away at the time. He just told me to do some blood samples so I did, and returned a month later for the results. We were shocked. I looked at my Mum confused, she grabbed my hand.

I knew for so long I’d been struggling but I still coped. Feeling a bit off didn’t mean I would lay in bed all day. My professor read my results out to me. That stated I had very active Lyme levels and Coxsackie virus. Along with Epstein Barr virus and Herpes 1,2 and 6. At first, we thought FABULOUS a diagnosis… how do we cure it?

Then Lyme disease and the other viruses were explained to us. This fight would be for life, a life-long struggle. The fight would become my life.

I returned to my GP (general physician) with the results and they told me I was crazy, I had an eating disorder because my weight was so low, and I would have to suffer with a ‘chronic disease’ for it to stay so low. They told me my results were false because they had been carried out above and tried to section me. The consultant however, couldn’t find any grounds on which to section me. I was perfectly sane.

I did try inpatient help on my own accord for my eating. It was an utter disaster! I lost 5.5lbs in just 6 days! They starved me on a liquid, low calorie diet and then bombarded me with everything I was intolerant too. I was so sick and hungry. I was forced to discharge myself. This proved to my GP it wasn’t me, it wasn’t my fault and I was perfectly sane. This battle will be is endless and there is no rest.

My health journey has made me PASSIONATE about helping others who are going through similar situations, trying to raise awareness about Lyme disease to prevent people from going through this hell.  A cure, even though we fight for one everyday is a long way of yet. Prevention is key to save future generations and loved ones from the disease at this point.

I am part of the Lyme Discussion UK Administration team and work closely with my local MP (Member of Parliament) to raise awareness on Lyme Disease. I hope my journey and story inspires many who suffer with a variety of chronic illnesses and that we never feel ALONE OR INVISIBLE as our illnesses can often make us.

I strongly believe knowledge is power, so I continue to learn and gain knowledge through meeting people, talking, listening and reading.

People are the best form of lessons and knowledge. Listening is SO important, people relate, people feel less alone and less alien. We pick up hints and tips, look down different paths and doors open.

My work with the Lyme Discussion Group has helped me understand the political fight we face, meet likeminded-people, gain advice, knowledge and FRIENDS. In my work, I have offered support to people who no longer want to keep fighting. My family has fought to have signs and poster placed around Residential and holiday parks across the country and I have my local MP fighting and pushing Government for better tests, treatment methods, research and awareness information.

I am also a Global Brand Leader also work with InvisiYouth Charity!

I hope to make friends, gain further knowledge and help people like myself who often feel LOST, worthless and crazy. I hope to inspire people to find a purpose when there doesn’t seem to be one and celebrate all the victories and pleasures in life to boost our moods and keep us fighting.

And my blog, Sophantastic, has been my own personal journal. A journal to store my research, new knowledge, treatment stories, personal struggles and medical issues with the world in hope that others can relate, and we can find comfort in not feeling alone in our struggles.

I won’t let the world change me, I must change the world. And I must change the world to become more accepting.

So many of us have battled years with feeling like we are ‘alien’ and don’t belong. Just because we are poorly it doesn’t mean we can’t reach our dreams, we can’t make a difference and we are crazy. Our dreams and goals may have to be altered but the constant ignorance and dismissal in the health industry for people with chronic illnesses and chronic disease is not acceptable or healthy.

Society needs to learn to not see our weaknesses in a negative light but as stepping stones to learn and gain strength from. To add power to our strengths. This simple change would help improve lives because everyone knows a strong mind is the best weapon.

My life with Lyme Disease has inspired me to become the stronger person I am today. I have felt pain beyond my limits and become grateful for every moment.

It has taught me that nothing can hold us back, only WE hold us back. We have the power to change the world, empower and inspire people all around the world.

Spotlight Story Program: Shona Cobb’s Story

Meet Shona Cobb

Breaking the stigma-ceiling for chronic illness and disability comes to second nature to British 20 year old, Shona Cobb. She’s used her experience of life with Marfan Syndrome to empower others living with disabilities and illnesses, and change the way businesses, media and society treat disability. Shona uses her successful blog and speaking on TV and radio around England to bring change to disability rights, and as an InvisiYouth Global Brand Leader, Shona’s advocacy can reach an international stage. 

‘Is there a cure?’ is a response I get time and time again when explaining my rare condition to everyone from friends to strangers in the street. Perhaps if I were diagnosed as a teenager, or even an adult, the realization that there is no cure for my condition would have been a difficult one but knowing all my life that I have a genetic condition has given me a long time to come to terms with my prognosis.

Marfan Syndrome is the name of my primary condition, the starting point for all my secondary conditions. It’s a genetic connective tissue disorder, with my Mum having passed it on to me, and it can be visible quite far back in our family tree, with 2 family members dying from associated complications during my lifetime. A daunting aspect of this multi-systemic condition.

Long limbs are one sign of the condition and my unusually long arms and legs were visible on ultrasound scans while my Mum was still pregnant with me. Officially I was diagnosed as a toddler, when I started to meet more of the criteria, but my Mum knew that I had inherited Marfan a while before that.

For most of my childhood I was a happy, energetic child. I had hypermobile joints that I would show off to my classmates and I got ‘growing pains’ a lot more than my peers. Unpleasant but not unmanageable. It was as a teenager that more serious problems started appearing. I found myself missing more and more classes to attend hospital appointments, and the reality of my condition started to sink in. It wasn’t just something I happened to have anymore, it was affecting my daily life.

I was diagnosed with Scoliosis, a curve in my spine, at 13 years old and by 15 I was unable to climb the stairs at school, finding myself doing worksheets in the library instead of joining my classmates on the top floor of the main building.

It was isolating and really affected me because I loved education and learning, I thrived at school and worked hard. So, when I was booked in to have surgery to correct the curve with titanium rods and screws I was over the moon at the prospect of some relief from the back pain. I blogged about my experience, with my Mum keeping a diary of my first week in hospital, which proved to be a good idea as I barely remember that week. I even documented my experience with a complication post-surgery and finding out that I would need a second surgery. That was the beginning of me using my experiences to educate and support others, and it was also the start of my body beginning to crumble.

By 18 I’d had one hip replaced and the other being on its way to needing the same, a difficult thing to get your head round when joint replacements are so often associated with elderly people. I really thought that after my spinal surgery, I would return to life as normal. Then after my hip replacement, I was sure that was it, I’d surely endured enough. It was downhill from there though and now, at 20 years old, I’m a powerchair user with a large cyst at the bottom of my spine being my current issue.

It’s incredible how humans adapt, after every surgery I believed it was over, I believed I could not cope with anymore but again and again I proved myself wrong. Resilient, that ‘s what people would call me. I believe though that we all deal with the hand life gives us in whatever way we can, everyone has struggles and mine happen to be health related. Others deal with grief, violence, homelessness, the list goes on. I was determined to take the hand I’d been dealt and make the best of it.

It would take me all day to list everything I’ve been involved with in the past 2 years. I’ve used my blog and social media to raise awareness of Marfan Syndrome and educate people on disability issues. I’ve talked about how environmental movements can affect and exclude disabled people on the news. I’ve been involved with a national newspaper’s project to document the daily access problems I come across as a powerchair user. For someone who was painfully shy as a child, I’ve certainly come out of my shell, and that is all down to me having a chronic illness and being disabled. I feel I’ve found my calling in life. I’m not currently able to work but I can use my free time and my voice to help raise awareness and make real change.

I’ve helped local shops install ramps to improve access for disabled people and I’ve worked with organisations to improve their inclusivity. Charity work is something I’ve passionate about though, being the Marfan ambassador for The Hypermobility Syndromes Association (HMSA) and being the youngest person in a British Heart Foundation (BHF) patient advisory group. I’ve taken what life has given and done my best with it.

People often speak about disability and chronic illness as though it’s the worst thing, but I feel empowered by disability. I am proud to be a young disabled woman, I am proud of the change I’ve made and am trying to make in this world. Being disabled and chronically ill is a huge part of my identity, why shouldn’t I be proud of that?

I hope to inspire other disabled and chronically ill people to be empowered by their conditions too, as many other disabled activists and campaigners have done for me. I scroll through my Instagram feed and I feel empowered to see so many disabled people not being ashamed of their disability and embracing their bodies.

I’ve still many rocky roads ahead of me, including major open-heart surgery and potentially more risky spinal surgery, but I still look forward, looking back at the past, at a life that could have been, has never done me any favours. I’m looking forward now, looking forward to the change I can make in the world, looking forward to being more confident and looking forward to a time where disabled and chronically ill people can feel empowered by their disability without others telling us we shouldn’t.

I’m excited to fulfill these goals and support others, especially in my new role as a Global Brand Leader for InvisiYouth!