Spotlight Story Program: Meet Asia-Jorden Alexander-Smith

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

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

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

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

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

Which, of course, they did.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Who am I today?

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

Spotlight Story Program: Meet Lauren Perry

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

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

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

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

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

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

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

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

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

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

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

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

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

Nothing surprises me anymore.

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

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

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

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

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

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

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

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

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

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

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

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

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

InvisiEvents Returns in Full Swing to Start off 2019 in Three American Cities

January 15, 2019 

This year, the InvisiYouth Charity team decided to bring back one of its most popular (and original) programs…the InvisiEvents! These are not just the events that we support our Global Brand Leaders hosting all over the United States, Canada and now Australia. And they’re not only our FUNdraiser events either—where groups ranging in all sizes bring donations to collect at their hangouts for InvisiYouth, whether that’s a dinner party, movie night, TV premiere or hangout.  We still want more of these to happen in 2019 and beyond…but we’ll tell you about that in a bit.

It was a mission for InvisiYouth that we would provide official InvisiYouth events for FREE regularly during the year. A huge goal for us is to allow young adults with any chronic illnesses/disabilities—both physical and mental—the opportunities to build community and be more empowered in social gatherings. For InvisiYouth, these are hangouts or meetups, so the traditional formula for charity events and fundraising is out the door!

We want you and your friends (both in and out of the chronic illness community) to do things you enjoy WHILE giving back!

What we also want to do is host more of our own hangouts with you at the helm of our creativity. And a way to go one step further is to partner up with other nonprofits and businesses. We are all about community and partnership so when we can collaborate with other like-minded charities/businesses, and build an even larger network of young adults, the better we can be.

At the start of the year, we partnered up with one of our longtime nonprofit friends, Suffering the Silence. They are a 501(c)3 nonprofit organization that use artistic projects such as photography campaigns (our founder has been featured in one photoshoot campaign too!!), documentaries, galleries, story nights and retreats to share the power of listening and sharing illness stories to generate the healing force of open and honest storytelling. They hope to build awareness and reform perception and treatment of the often silences—the chronic disease community.

And since they not only work across the USA, but also have badass female founders, Allie Cashel and Erica Lupinacci, it was a perfect fit! We wanted to start the year building all that self-care and community to provide fun hangouts. And our THREE gatherings went from coast to coast, so we could connect, relax and enjoy some food and coffee!

In Hoboken, New Jersey, our founder Dominique Viel and STS cofounder Allie Cashel, hosted a fun brunch—provided by the lovely Wicked Wolf Hoboken—with great food, good views of the NYC skyline and awesome hospitality.

In the Windy City of Chicago, Illinois, our Global Brad Leader-All Star and STS Ambassador, Effie Koliopoulos, held down the fort on our super cozy coffee house hangout. And with delicious pastries provided by Beatrix Chicago and a modern atmosphere of Tri-Door Chicago hosting, who wouldn’t love it!

And last, but certainly not least, the other wonderful cofounder of STS, Erica Luppinacci, led our Los Angeles, California coffee house meetup at the chill Madison Park and Coffee with lots of conversation!

If you want to help us bring these events to life, it’s simple—contact us on our website, or DM us on social media by FacebookTwitter or Instagram! We always answer and we want you to join the InvisiYouth family!

And the Total is in! InvisiYouth’s Charity Teams for England’s Superhero Disability Triathlon Raised a Total of…

By Dominique Viel

September 8, 2017

After months of fundraising, campaigning with family and friends and online through our GoFundMe Page, InvisiYouth’s Charity Teams that participated in England’s first inclusive disability adaptive triathlon have ended their fundraisers.

We received donations online and donations in the mail and on our website’s donate page too! We are happy to announce that our Charity Teams fundraised a grand total of $1,000!

All these funds are going directly into building InvisiYouth’s new illness management tools and programs that will give back to so many teens and young adults with chronic illnesses.

These tools and programs will be unique, showing a wide older youth illness and disability community all the life hacks and tips to navigate life while living with illness, or as we call it, the non-medical side to medial experiences. 100% these donations are going to help build them!

Each of our teams competed in three sports at the Olympic Dorney Lake in Windsor, England: swimming, running and cycling.  Different teams of people with disabilities and chronic illnesses came out from across the country, along with their supporters of friends and family (and sometimes dogs too), all who worked together to complete these events.

InvisiYouth Charity loves supporting disability sports and the way adaptive athletics can play such a critical role in the life of a teen and young adult living with chronic illness and disability.

It is a way to get them back into a routine, physical therapy, and teamwork mentality. It is a powerful force that needs more attention and support group to it!

Our teams consisted of lifelong friends, and competitive athletes in university, supporting their friend with a rare disease. Another team was filled with family members and siblings.

And we even had a married couple that are passionate physiotherapists and exercise therapists who want to work with InvisiYouth to train and bring adaptive sports to more older youth across England.

One InvisiYouth Team member, 21-year-old university student Katy Baker, felt the benefits of being part of Superhero Series Triathlon.

“[The Superhero Tri] proved that people like me, with chronic illness, can take part in sports with their family and friends,” said Baker. 

Watching our teams cross the finish line at the Superhero Triathlon was unlike anything we could have experienced. So much joy and excitement from accomplishing their goal, and watching all the other youth, families, friends and supporters crossing the finish line and earning their medal.

It is clear to say that anyone can get so motivated watching such a strong group of people competing in all types of sport!

Now…InvisiYouth Charity is happy to announce that we will also be part of the next Superhero Series event, the Winter WonderWheels on December 3rd at Dorney Lake once again!  This will be a massively festive disability adaptive sporting event where anyone can cycle, walk, run, push/be pushed around Dorney Lake for different distance challenges: 1km, 5km or 10km!

AND WE NEED YOU TO JOIN OUR TEAMS!

We want to have a full set of teams so if you want to compete with friends and family FOR FREE, contact us, and we will sign you up for a fun and festive event to end 2017! 

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

All of Those Exhilarating Peaks and Mega Excitements of My England Travels for InvisiYouth Charity

August 31st 2017

I recently took a trip to England all in the name of expanding InvisiYouth’s new programs and meeting with some of the amazing InvisiYouth supporters we’ve come to love and support over the years and charities we’ve admired for a while.  We have heard from some many of you that you wanted to hear all about my trip, and how I was able to handle all of that travel.  Now…I cannot give too many specifics about our new programs because we’re in development (and really, what would the surprise be if we told you everything before our prelaunch)!  But I can certainly share all the behind the scenes of my England trip and travel.

There are two big reasons why I wanted to make sure InvisiYouth made its way across the pond to England as our first major international InvisiYouth trip. One was the fact that England has been the first and most overwhelmingly supportive community since the day we launched.  The first teens and older youth with chronic illness and disability to follow InvisiYouth were all British.  And the first charities to reach across and want to lend support to InvisiYouth’s mission were from the United Kingdom.

That support network has continued to grow during our two years. We’ve even had an InvisiEvent in London last autumn, proving that InvisiYouth reaching beyond geographic, we are designed for older youth and can reach them anywhere!

The second reason to go to England was due to our Charity Friend role in the first Superhero Series Triathlon.  This was England’s very first adaptive disability triathlon, where people of all ages, disabilities and illnesses could compete in swimming, running and cycling with as much support and adaptive equipment as needed.

With the backdrop of the 2012 Olympics venue of Dorney Lake, the event was going to be unlike anything experienced before.  And with InvisiYouth having a group of teams all competing on behalf of InvisiYouth to fundraise for us, we had to make sure that we were there supporting them on their amazing job well done.

I have to say, what made the experience of bringing InvisiYouth even further into the UK even more special was that I was able to bring my entire family over with me, and getting some awesome memories of family time included in the work trip.  When life gets so chaotic and crazy, which can easily happen owning a charity and almost 25 years old, it is special to make memories with your family.

These are the people that have been my support system throughout my entire life, and even more than most families because they have become my rock throughout my health struggles.  Going through a chronic illness, growing up and finding myself as an adult with health struggles, is more complicated and challenging than any amount of words can describe.  But it has been my family that has help pull me through all the complexly stressful hardships that having RSD and EDS can really bring into your life.  I am thankful for them beyond belief, for their love and devotion, and their support of InvisiYouth Charity and our mission!

The England experience was an amazing opportunity to meet with individuals and charities who are going to be part of this new, evolving chapter of InvisiYouth Charity as it expands its advocacy education with our new tools and programs.  These illness lifestyle management tools are going to be the backbone of InvisiYouth where our events and speaking engagements will feed off as we continue to grow in the years to come.

I have always said that InvisiYouth’s focus is the age demographic in the illness/disability community, not the specific illness or disability, and we focus on the nonmedical side of the medical experience.  There are so many facets of life outside of illness when you live with one, so InvisiYouth cannot be more excited to provide support to help these young people live life and navigate life with illness so it can be fun, empowered and fulfilled in all its unique, adapted ways.

It is important for InvisiYouth to have more than just supporters in the UK, we need to have partners and lead volunteers in these other regions in order to engrain and expand the InvisiYouth tools and mission.  So it is completely obvious that these British older youth and charities will become part of our expansion and part of the InvisiYouth family. I am literally ripping at the seams wanting to share with you how fantastic each of these meetings were, how amazing these people are, and how completely overwhelmed with joy the InvisiYouth team is to know these organizations are going to be part of something we’re creating.

It is a massive THANK YOU to the always dedicated nonprofits like Once Upon a Smile, English Federation of Disability Sports, The Mix UK and CP Teens UK.

It is a gigantic THANK YOU to the empowering and fearless leaders like Sarah Alexander, Chloe Tears, Catrin Pugh and Emma Franklin.

There were even so many other British older youth and charities that we didn’t get to meet in person but we are going to be connecting with through the powers of technology and Skype now that we are back in the states.

Now, coming off such a successful meaningful and fun trip, we gotta break down the peaks and pitfalls of travel with a chronic illness like RSD.  I always joke that the pain and symptom peaks feel worth it when the experience is so worthwhile, and going over to England and creating these connections to expand InvisiYouth’s work even deeper into this nation was worthwhile.

Sitting on planes for almost nine hours straight doesn’t work well with RSD, so you must accommodate to your medical needs.  Getting medical documentation from doctors about being about to move around plane, to have people required to sit near you to help if side effects arise, all important to have.  And if you’re like me, and you are partially bionic like I am with rods and screws in my spine, then it’s always a good idea to have a medical letter notifying your metal (titanium or not) because it’s best to be safe when you’re going through airport security.

Make sure you have your own checklist for your medical needs (like medications, adaptive equipment, and what I call ‘checkup tools’).  I always like to make sure that my staple backups of support like Tylenol, KT Tape, bandage wraps, mini heat packs, resistance bands, and much more.  And you gotta make sure your wardrobe can match too.  Bringing additional layers when I deal with my limbs going too cold, shoes that can adapt to swelling easily, and dresses with slits so I could easily bring respite to my knee.  All these fashion tips made my travel easier.

But a major savior for me was timing.  I had to make sure my schedule was planned with work, with touristy stuff, as well as my medical rest time.  I had to make sure that when I was travelling, whether on a train, a cab, an Uber ride, or even a plane, that I was using my off-time wisely to recuperate from my symptoms to make it through each day.  And when I had resting time at the end of the day, it was all about heating, massages and elevation.  When you put time into your travels to focus on your health, it actually becomes a true travelling vacation and fun experience.

Yeah, when I got back to the states I had to put in some additional PT sessions, resting time and acupuncture, but with some focus on how to combat travel with a chronic illness, you can get through anything and ease what can be a setback on the return home.

Truth be told, I think England is now going to be a staple trip for Team InvisiYouth each and every year!  And while we’ll be having a team of supporters in the country year-round hosting and supporting all things InvisiYouth, I’ll be making sure that the UK is a top priority visit for us as we grow.  Not only did I love the people, culture, architecture, and cities, but I loved how warmly InvisiYouth’s mission and belief system was received and that deserves lots and lots of more England trips to come!

So…where will I be heading next for some InvisiYouth fun and work?  You’ll have to check out the InvisiYouth website for next month because we’re crossing country borders yet again!

~Dominique