Spotlight Story Program: Meet Rachel Hoy

Meet Rachel Hoy

Starting off 2021 with an upgrade to our Spotlight Story Program because it will now be MONTHLY human stories told BY young people FOR young people in the chronic illness/disability/mental health community! 

There is no better person to start the Spotlight Story Program for the new year than lyme disease activist and owner of the popular brand Tee Spoonies, Rachel Hoy. Being part of our Global Brand Leaders Program for two years, now as a #GBLAllStar, Australian Rachel has been such a firm believer for empowering young people with chronic illnesses to advocate for themselves. This coming from her experience living with Lyme disease and co-infections, along with POTS, MCAS, interstitial cystitis and autoimmune conditions. She understands that balancing life, work and chronic illness takes time–especially living with Lyme disease in Australia as comprehension and treatment access is harder to come by–and learning how you empower yourself to enjoy and succeed in life with any health struggles was something Rachel was super passionate for, and it resulted in her creating her own brand Tee Spoonies. Selling ethically made products like pocket tees, scrunchies, cards and more, Rachel has built a community behind Tee Spoonies that mirrors her style of activism perfectly!

My name is Rach – I’m a 28 year old Australian living with Lyme disease & co infections as well as POTS, MCAS, interstitial cystitis and autoimmune conditions.

I was infected with Lyme & co infections on a trip to the USA after finishing my Master’s degree six years ago.

The first two years after getting sick I spent most of my time searching for a diagnosis, only to find out when it did come, that the hardest part was ahead of me.

At 22 years, I had travelled the world, completed two degrees and worked as youth state manager and campaign designer for World Vision Australia, so having to step back to focus on my health was a steep learning curve.

Living with chronic Lyme disease in Australia is especially hard – it is recognised and understood even less here than overseas, which means limited access to doctors and treatments.

After six years of living with Lyme & co my illness has really progressed.

My main symptoms are severe joint pain, fatigue leaving me mainly housebound, headaches/migraines, gut, bladder and mast cell problems, and neurological issues including up to twenty seizures per day.

I learnt rather quickly how tough it could be living with chronic illness as a young person, including doctors who denied the severity of my illness and friends who left my side in the hard times.

I also realised the apparent need for us to be continually advocating for ourselves as chronically ill youth.

One day I had a light bulb moment and realised I could combine a number of my passions together: advocacy, ethical consumerism and design, in order to raise awareness about living with invisible illness.

My first design idea with Tee Spoonies was the invisible illness pocket tee, which has grown to be the most popular!

Having the tee resonate with so many invisible illness warriors has meant a lot.

I sew all of the pockets myself which adds a personal touch.

The chronic illness community is important to so many, and being a part of it in this way, and being able to create products that empower fellow spoonies has been a blessing.

Working with InvisiYouth the past two years has been a great experience. I’m proud to donate 100% of profits from our fundraiser upcycled scrunchie packs & 50% of profits from our recycled paper gift card packs to InvisiYouth.

Our brand is all about making unique, sustainable, ethically made products that are a labour of love.

We also donate 10% of all profits to the Lyme Disease Association of Australia. You can check out more on our website here: teespoonies.com

If I could give some pieces of advice to young people struggling with the throws of chronic & invisible illnesses it would be to remember your inherent value in this world over anything you could possibly accomplish.

Goals are great but values are key.

Often living with chronic illness can mean pushing back or rearranging timelines or goals, which can be disheartening, but who you are in life is a lot more important than where you are in life.

And if you’re reading this now I already know who you are is amazing, because the perseverance, resilience and strength living with serious illness requires does not come easily.

Secondly, you are not alone.

No matter how lonely, devastated or isolated you feel – there is a community out there who understand what you’re going through, and want to support, empower and help you in any way they can.

And lastly, YOU know YOU better than anyone!

Trust in yourself and advocate for your needs… with a little help from your friends 🙂

*to learn more about Rachel’s involvement in our GBL Program, click here. And to learn more about Rachel’s products with Tee Spoonies, click here.*

 

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

InvisiYouth Charity Launches Video Podcast Series as First of Virtual Programming

April 1st, 2018

The wait is finally over, and after over year of preparation, InvisiYouth Charity will be launching its Virtual Programming. This is begin in May with our video podcast series, InvisiYouth Chat Sessions! It is to be hosted by our founder and executive director, Dominique Viel, who is taking her public speaking background and flipping it behind the mic to host our series.

We often discuss at InvisiYouth that traditional methods of providing educational resources, to provide outlets of confidence or empowerment tools, does not gear itself to the young adult demographic. It was imperative for InvisiYouth Charity to not only lean into our virtual platform, but to also make sure it was accessible. Our series will be a video podcast so it can be inclusive to the hearing-impaired community with our YouTube channel for the visual show, and accommodating to the visually impaired community with our audio podcast show being on NINE podcast platforms (we’ll list those at the end, no worries!). Our nonprofit loves being a fully inclusive community so to have a series that anyone could access was important.

Also, an immediate uniqueness to InvisiYouth Chat Sessions is that it’s unlike any other chronic illness/disability or lifestyle podcast out there. No, we don’t follow the traditional interview profile, and we don’t have solo shows.  Each episode is designed for our special guests, and it is laid out like a late-night chat show. We have funny segments, rapid fire questions, majorly deep conversations, top five checklist creations, impactful or funny life story-telling, and even segments based off Tinder…so you know it’s going to be a crazy hour every episode.

The tagline defines the show quickly: Check in for a dose of stigma-breaking, humor-filling, empowerment-building life hacks and motivation tips for all the “medically adult-ish”™ young people.

It is a biweekly video podcast when we’ll bring guest experts from all illness/disability communities, like mental health, rare disease and bereavement, to YouTubers, activists, adaptive athletes and actors, that are YA game-changers to tackle topics that are often too taboo, uncomfortable or common sense, while providing some lifestyle management and tips.  InvisiYouth strives that is aids young people between the age of 13-35 with any chronic illness or disability, both physical and mental health, to have tools to thrive in daily life with their health struggles…and that is why InvisiYouth focuses all its programs like this virtual program on the “medically adult-ish”™ population. It’s a chat show unlike any other, with fun games, segments and guidebook sections.

Special thanks to our team, our founder Dominique, our podcast and filming studio, Gotham Podcast Studio based in New York City, who supports our show and nonprofit to help us have the platform to create InvisiYouth Chat Sessions! And major shout out to our band sponsor/theme song creator Bryan Hansen, for helping this dream have the best soundtrack ever! We’ve got some killer guests lined up, so get ready for an epic season.

All the links to our show are below, so please help our nonprofit and SUBSCRIBE to our YouTube channel, and all our podcast channels too. And give the episodes a listen or watch, thumbs up, rate and comment because each view and positive rating makes the difference!

YouTube

Apple Podcasts

Spotify

Google Play

Stitcher

iHeart Radio

CastBox

AudioBoom

Deezer

Player FM

 

A Season of Giving, A Time of Gratitude for All the Often Unsung Heroes in Our Spoonie Lives

December 20, 2017

 As the holiday season rolls upon us, we are all bombarded with some holiday spirit in some shape or form. Sometimes it may not feel that jolly or cheerful, when that serious case of F.O.M.O. kicks in because your health or limitations may prevent you from being the #1 social member of your friends. That’s gotten to me loads of times in the past when I had to give the “spoonie no” because my body prevented me from taking part. But as years have done on, and I’ve settled into my adapted-normal way of life, I have come to note that my sentiment of missing out should not be my focus. Not just during the holidays, but for all 365 days of the year.

I have always been a lover of the wonder and joy that the holiday season brings…seriously the Hallmark Channel Christmas movie Marathon is a background staple in my house. All that fresh pine and cold, crisp air, that rich warmth of Christmas light illuminated around while being surrounded by family, that make makes you feel a bit more wonder-filled than any other time. It is from my love of blissful optimism of this time of year that my focus remains on all the good times, fun moments and what I’m capable of and grateful for as the year comes to an end. When you deliberately choose to focus on what you have and are grateful for, the more your attitude will be optimistic and you’ll be able to feel that holiday spirit.

As I let that Christmas energy spread, I get time to reflect on what to be grateful for, some major gratitude. Usually, I’m told to be grateful for those moments of health, of my body functioning well. And that is something I am thankful for as this medically-crazy year ends. But I want to show love to that second layer of my health journey, my caregiver inner circle. All too often, I’m complimented on how I adapt my health struggles, and the platform my organization has given for the young adult “medically unique” community to live fun, fulfilled and badass lives. And while I appreciate the kindness, I always want to say, “there’s so much love and support in my life, that’s why I’m capable of doing all I do.

The support systems we develop as young adults with chronic illnesses, injuries and disabilities are the unsung heroes in our daily existence. They are the individuals that see us in our vulnerable and courageous moments in life, they ones who advise us on our life choices and stay by our sides to get us through all the hurdles and cheer us on when we reach a milestone.  They come in all forms: parents, siblings, loved ones, friends, caregivers, doctors, nurses, physiotherapists, talk therapists, and more.  These supporters are like secret ingredients that make for the perfect medical recipe for recovery and lifestyle success when living with illness or disability.

As I looked back on 2017, I noticed that it was one of a lot of medical complexities for me personally.  Going into my ninth year as someone with health struggles post-injury, I was able to really look at all the people who’ve been there for me, who’ve stepped up during my resurfacing injuries, and new health battles.  The people who’ve been part of my story since day one, and those who’ve joined along the way. I couldn’t reflect on 2017 without talking about the people who’ve helped pull me through a tough medical year, and have assisted me being able to go into 2018 with more clarity and adapted normalcy again.

I’ve been thankful for my friends, both new and old for always being there for me.  When many of friends were confused by my health struggles when I was younger, I had lots of people pull away, using their lack of understanding and insecurity about my health as a means to an end. But the friends I have now, my loyal group of funny and trusting friends, have always been open-minded, asked questions, just gave me a shoulder to lean on, and a stupid joke to laugh at.  Some were friends before my injury, others during the mist of my medial chaos, while more are from the chronic illness community that’ve joined my life since I launched InvisiYouth.

I’ve been thankful for my doctors and clinicians who’ve been part of this crazy journey since I was fifteen with a swollen blue foot and hand, especially my physical therapists.  When your doctor count goes as high as mine does, you tend to have a special place in your heart for those that truly dedicate themselves to making your health improve, to beating the symptoms and setbacks alongside you.  I’ve had the same physical therapists since day one, basically seven years, and it is their constant fixture in my treatment, especially this year as I walked back into the PT world yet again, that really made me grateful for them as they pushed me and made me laugh through it all.

I’ve been thankful for my sister, who’s always been a supporter and warm heart throughout all the changes that life can bring.  She’s been a best friend that’s always made me continue being young and energized while my health was not.  I got to grow up and experience a semblance of normal teen years because my sister made sure I got to be part of it.

I’ve been thankful for my parents who’ve pulled me through the ups and downs my health brought.  For my dad’s ability to come into my PT sessions, tell me jokes and make me laugh when my body wanted to give up. For my mom’s great heart, dedication and undying love as she brought me to every doctor, talked out medical decisions, showed me the positive in each situation, so I always believed in myself.  My parents are the greatest people I know, the best duo I’m grateful raised me to give back and love with a whole heart.

It is these people, their support of me that often goes unnoticed by the outside world, but it never goes unnoticed by me.

These unsung heroes offer their support, expertise, humor, shoulders to cry on and guidance without ever being asked.  They are the individuals I am most grateful for as the year closes, and as I’m moving into a new invigorated chapter of life, especially in a new exciting time for InvisiYouth Charity, I have these people, and so many others that aren’t even mentioned, to thank.

Gratitude for your support of my health, my organization, my dreams and just of me.  And spoonies: take that time to show some gratitude to your support systems, to your unsung heroes this holiday season.  It’ll surely get you in the spirit of getting 2017 ending on a high note and 2018 starting off in a positive footing.

~Dominique

The Invisible Illness Chronicles: It Can Be Exhausting to Feel Like You Need To Act Healthy When You Don’t Feel Healthy

October 17th 2017

I constantly get questions about the hacks to living with chronic illness (I mean, that’s what InvisiYouth Charity’s mission in life is all about). Those questions double when it comes to life with an invisible illness. It only seemed appropriate that with part of my monthly blog I would wrote some blogs on topics surrounding invisible illness.

At InvisiYouth, we constantly promote the vitally-needed change of inclusivity on all chronic illnesses. To treat physical health and mental health exactly the same. To show equal support and aid regardless of visibility. To note that invisible illnesses are note just of the mind, but also of the body too.  So…to honor if you will, the fact that I live with one foot in both the visible and invisible physical health struggles, I’ll be occasionally posting articles on the unseen struggles. These are appropriately titled “The Invisible Illness Chronicles.”

The biggest struggles living with invisible illness (besides the actual illness itself, of course) is how you can look so healthy and feel so horrible. It can be like you’re living in a sound proof booth without the mic on, everyone can see you, but no one can hear what’s going on. For myself, it’s this weird concept of dealing with all these medical symptoms affecting my nervous system, muscles and vascular system but no one can truly see the damage it takes on my body at all times.

So when my life has to involve the outside world, specially those not in my close inner circle, I feel like I have to put up the mask, to adapt and get through my schedule for the day. I go into business meetings, and conference calls with potential advertisers and Skype calls with older youth health advocates and subconsciously, I put up a front as the “healthy nonprofit owner” because that’s what I know what I look like.  Sometimes I’m driving to meetings with slippers and sunglasses, isotoner braces on my ankle, hand and knee, but the second I park my car, I have to take all that off, strap on heels, and put on the boss lady smile to power through meetings.

Now I say “I have to” like it’s an obligation, but this is a decision I make out of societal structure if I’m honest.  I look completely healthy on some days, but anatomically, my RSD and connective tissue does not reflect that at all.  I am living with a chronic illness that I have to adapt my entire way of life around it, but the people who do not know me would not know that because I’ve had nine years to master a “new normal” way at life.

Truly, it is exhausting to act like I am healthy, to walk, sit, talk, and be the healthy person my physical body makes everyone think I am.  But also, it is equally exhausting to have to explain to every single new person that I meet what my medical situation truly is, to tell them about my chronic illness.  So I have make a decision: should I be exhausted by having to try to explain my health to people who I’m just meeting, or be exhausted by acting as healthy as I look?

I choose the later.

When you are living with an invisible illness, it can be really hard to be given any true empathy because no one can gage your medical situation by looking at you.  No one that is not a family member, sibling, caregiver, boyfriend/girlfriend, or friend knows about the health struggles you live with on a minute by minute basis, so they honesty think everything is completely fine with you.  It becomes and ‘all on you’ situation because the world will not automatically feel for your chronic illness because it cannot see it.

You need to dig deep in yourself, find strength and sympathy in yourself for your own journey with your illness.  Find comfort in those around the world that are also living with your invisible illness that can relate to your truth.

It’s a two-fold community you need:  get your supporters who can build you up like family and friends that are by your side because they love you, and get others in your life living the same journey of invisible illness that relate to you.

That is why I make the conscious decision to put on the mask when I need to be the healthy nonprofit owner that my physical body says I am on some days, to walk into meetings with sponsors or fellow charity owners and I will meet with them for hours of work, getting back into the office completely exhausted and dealing with symptoms and side effects for hours of recovery.

I repeat, it is so beyond exhausting to act as healthy as I look from both a medical standpoint and mental standpoint because my entire body physically will hurt from the trauma I put onto it to “act healthy” while I also put myself under stress from people just not relating to the situations I am going through.

But there is a bright side to all of this.  When I get back to my office, I’m on a mental rush of all the good things that will come from the work that I’m doing, from the philanthropic work I do each day for the young people I get to help.

Also, I sometimes feel like I have to act as healthy as I look when I give speeches to teens, or meet up with old friends.  And the funniest thing is that for those hours, none of them will ever know about my health…that is until I reveal that I am living with an invisible illness!  It is absolutely amazing when I pull up my photos of the physical symptoms of living with a neurovascular condition and the physical symptoms that sometimes to plague my body that sway the pendulum over to the visible illness category.

It is amazing to see the way people treat me completely changes once they can actually see my illness. And that’s so wrong if I’m honest! There is just an entire new level of recognition on these high schoolers’ faces when these young people can finally see that I am someone that lives with a chronic illness but also lives a completely fulfilled life…I just live it on my own terms the way my body allows, regardless of what society says is “normal.”

There are so many days I wish I could yell out to the world, take some sort of magic wand and immediately change how society looks at those it deems ‘different’ in one swoop.  That invisible illnesses are not something to fear or be confused by, but something to learn from and give empathy to like everything else in life.  No one should feel obligated to hide their health, it should just be an automatically understood element to someone’s lifestyle.

Everyone is unique, and if we celebrated uniqueness, then we shouldn’t have a problem embracing that when we meet people, because we would constantly be learning.

I always say that living with an invisible illness is like a game of “Where’s Waldo?” The problem is that none of these people were told to were the signature red-and-white striped shirts and black glasses so no one can find them among the crowds throughout the world.  It is our job as a society to become vocal and talk so we’re found, and to change the stigmas surrounding invisible illnesses of all kinds.

~Dominique

Spotlight Story Program: Louise’s Story

Meet Louise Cooper

We’ve gotten to know Louise first as one of the cool British health and lifestyle bloggers that followed InvisiYouth, but we are getting to know her even better as a member of the InvisiYouth team for this winter’s Superhero Series Winter Games this December!  She’s an Ehlers Danlos Syndrome warrior that’s found ways to balance her love of sport and travel with her illnesses, and her open honestly makes her one to watch in our book.

My name is Louise, I’m originally from Essex, England. I was diagnosed with Ehlers Danlos Syndrome, PoTS, Chiari and a whole host of other conditions in 2015 and am still under investigation for a variety of things!

I have always been a “sporty” person, I didn’t find out about my EDS (a connective tissue disorder that can affect the skin, joints, muscles and vascular system with hyper-mobility and hyperelasticity) until three years ago when I was 25, but have been in and out of hospital my whole life and had a back brace for scoliosis at the age of 12 for a few years. The only time I didn’t have to wear my back brace was when I was exercising, so, if there was a sport – I did it! I was also a competitive swimmer throughout my teens, I even made it to nationals (albeit in a relay team by HEY, it still counts!). Unfortunately, after various immune issues and bouts of glandular fever and CMV my exercise started to tail off in my late teens and early 20s.

I held down a full-time job for 5 years, bought my own apartment and car, I had everything I needed! Things came to a head around 18 months ago and my body just said ENOUGH, I was working ridiculous hours at a job in London with the commute, and not looking after myself much. The average person would burn out, let alone someone with a chronic illness, but I guess that’s just the fight in me.

So I started back with physio, some days I’m fine, some days I’m not! I like someone who gives me physio exercises based around the gym – I just respond better that way, I like to be challenged and push myself further however it is SO important to do this correctly and under supervision. Physio will always be a part of my life as I will always have ups and downs in my health but I dont see this as a negative, I learn each time what I can do to strengthen or protect my body in order to prevent or minimize thedisruptionto my body for the next time.

I have found it’s important to use supports, straps and anything else for your physio exercises and gym routines. This will always give you the confidence to know you are safe while exercising! I currently wear, finger, x 2 wrist, knee and back supports when working out. While there’s not an awful lot I can do about my ligaments and tendons, I can strengthen and tone the muscles around my body to get them performing as best as possible! Being back in the gym the last two years hasn’t always been easy. I’ve a fair share of blips along the way with disc tears, bulges and tarlov cysts now appearing, but this has only made me more determined to keep going! Keeping mobile and active reduces my pain, but there is a very careful balance, I have to make sure I dont overdo it and listen to my body!

I also have to make sure that I listen to my health not just through exercise, but through my diet and medications as well.

By health, I mean nutrition, taking my tablets and everything in between. I’ve always had food intolerances, but recently these have become a lot worse. I don’t believe in cutting out EVERYTHING from your diet, it’s everything in moderation and finding out what works for you.

My motto is – listen to yourself. I find my body tells me what I need but generally, I’ll eat meat, fresh veg and a small portion of carbs. Its about trial and error and finding what works for you, and you really, really do have to persevere, it won’t change in a week, it has to be a lifestyle change in order for it to work.

Possibly most importantly – Take your medication!! They are prescribed for a reason – and I know this can be hard, I am forgetful, this is something I’ve really had to work on! It sounds SO easy and its not that I don’t want to take them it just becomes – I’ll do it in a minute! How do I manage it now? I leave my tablets in my room and kitchen, if there staring at me, I can’t avoid them!

When living with chronic illness, it not only can take a toll on your physical health but also your mental health. My mental health impacts on my ability to participate in my exercise plans and my dietary programs. If I am feeling pessimistic (which we are all entitled to at times) or having a bad day, I am less likely to want to go to the gym or look after myself as well or cook my dinner.

Now this isn’t necessarily a bad thing, nobody in the world is 100% positive all day everyday, but for the most part, I think it is important to have a Positive Mental Attitude (PMA). Even on my bad days, I always try and find a positive. For this reason, I usually have flowers around the house – if I can’t think of anything else nice about my day or if I’m feeling low, I can always look at flowers to give me a “pick me up.”  Negative thoughts cannot change what has happened or the current situation you may be in or what your future may hold. But, what can change it? Trying.

Trying everything, and anything thrown your way.

I moved/travelled to New Zealand, started promotional modeling, made a great group of friends, went on adventures, hiked 4 hours in a bush, appeared on TV (albeit an extra!), my health was the best it had ever been! I’ve recently started a forum along with some Chronic Illness friends and we will be uploading beginners home workouts and basic physio (all are qualified, I will just be performing the routines).

But one day I woke up unable to move and spent the next 2-3 weeks in and out of hospital and have since, pack up my room and sold my furniture in New Zealand and returned to Essex to give my best chance of recover and further testing on what we believe may be neurological.

One thing that I’ve always found incredibly hard – and still do – is I look totally “normal”. I don’t have a cast on my leg or have visible scars so I often hear the phrase “but you don’t look sick”. I’m quite open about my health and try and raise as much awareness as possible, by posting “normal” pictures and trying to change the way illnesses are perceived – just because you can’t see it, doesn’t mean it’s not there!

Am I nervous, anxious and scared? Of course! But I’ll keep trying and determined to keep going, if I’ve learnt anything its that were a lot stronger than we realize and give ourselves credit for.

That is why I’m so appreciative of being asked by InvisiYouth to be a part of their Charity Team for this past Superhero Series Triathlon for disability adaptive sports.  And while I couldn’t compete that day, I am thrilled to be part of the new InvisiYouth Charity Team for the upcoming Superhero Series Event this December, Superhero Winter Games. The work they do is very close to my heart and something I’m so passionate about – I wish I would have had this connection to the community in my teens – before the days of social media!! I cannot wait to support InvisiYouth in the Superhero Winter Games run and hopefully raise a bit of awareness too!