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

InvisiYouth Launches Fundraiser Campaign, InvisiYouth Give Back Challenge for December

November 25, 2019

InvisiYouth’s month-long fundraiser campaign, InvisiYouth Give Back Challenge, launches December 1st and has goals beyond just raising needed funds that will support our programs/events helping young adults with chronic illnesses and disabilities.

(Donate on our JustGiving Page or GoFundMe Page!

100% goes towards InvisiYouth’s 2020 programs!)

This is a fundraiser encouraging everyone to find the ways in their life they can donate back at any scale—where quantity per donor is NOT the priority. It is all about mobilizing young people and their support networks to be small pieces of a large fundraising goal and knowing with certainty each cent matters.

#IYGiveBackChallenge is the first fundraiser campaign built to be easy and stress-free…how amazing is it to be able to feel good AND do good during the holiday season without the hassle.

And the steps to give back are simple:

1. Find one part in your daily life this December and flip it into a mini fundraiser moment!

We’ve got lots of quick #IYGiveBackChallenge ideas here!

Make your coffee and donate that to InvisiYouth!

Collect your coins for December and make that a donation 

Donate in someone’s name as part of your holiday gift that keeps on giving!

Make those holiday parties and friend movie night hangouts super feel good and collect mini-donations from each person for InvisiYouth!

Just want to be awesome one day and drop a donation, that’s perfect!

More ideas on our website too!

2. Donate that amount (any amount, in any currency) to either of our fundraiser pages! (JustGiving or GoFundMe)

3. Donate Shout yourself! Use our #IYGiveBackChallenge certificate on our Instagram or download it here. Plus, we want to give you a shout out for your donation! So tag @invisiyouth!

4. We encourage everyone to get into the giving back spirit and challenge up to four people to also take the #IYGiveBackChallenge!

Friends, family, colleagues, loved ones, Instagram friends or your favorite celebs, influencers and athletes too! Anyone you can think of, challenge them, the more the merrier!

Our goals of $2,000 is so tangible if each person even donates the smallest amount they can and creates a way of donations for change!

100% of all donations in the #IYGiveBackChallenge will be used for InvisiYouth’s 2020 programs (virtual, resources, and leadership training opportunities) and events. Your money will be directly aiding young adults with chronic illnesses and disabilities that truly need our help to thrive and succeed in their lives.

When you donate to InvisiYouth Charity, you are changing a life for the better, and that’s a guarantee! So please, help us be able to continue our work supporting these deserving young people because we cannot do it without you.

Take the InvisiYouth Give Back Challenge, share it on social media, challenge your friends, family, followers and favorite celebrities to get philanthropic with you! What better way to end 2019 feeling good about yourself than knowing each cent you donate is impacting thousands of lives in the year ahead of us!

WEGO Health Awards 2019 Nominates both InvisiYouth Chat Sessions video podcast and founder Dominique Viel

July 29, 2019

InvisiYouth Charity has felt the love this summer as it was announced InvisiYouth Charity got two nominations with the 2019 WEGO Health Awards. Our video podcast series, InvisiYouth Chat Sessions, was nominated for Best in Show: Podcast, and our Founder/Executive Director, Dominique Viel, was nominated for Patient Leader Hero. WEGO Health is a company that connects millions of engaged healthcare consumers by allowing networks of leading patient advocates to work and collaborate across health conditions, disciplines, and topics.

Every year since 2011, WEGO Health has hosted their awards, a celebration of the world’s leading healthcare advocates, especially in the virtual space! And you know how much we love a good virtual activism platform—just take a look at our video podcast series, downloadable resources and advocacy campaigns! Categories range from Best Video Series and Best Team Performance, to Best Instagram, Healthcare Collaboration Patient, Advocating for One Another and Best Kept Secret.

There are over 6,000 nominees across 15 categories which go through a month of endorsements from the general public and then a judging panel help narrow it down to the short-list nominees per category. And it is from this that the ultimate winners are selected and get to go to Las Vegas, Nevada in October for the actual ceremony.

And what makes these award nominations for Dominique and InvisiYouth Chat Sessions so amazing is that a couple of our Global Brand Leaders are also nominees! Last year, Global Brand Leader-All Star Effie Koliopoulos from Chicago, IL was the winner for Rookie of the Year 2018! This year, our Global Brand Leader Mikaela Basile from Canada is nominated for Best Instagram, while our Global Brand Leader-All Star Madi Vanstone, also from Canada, is nominated for Patient Leader Hero, Best in Show: Podcast, and Advocating for Another.

To see such a strong pull of InvisiYouth Charity team members in the WEGO Health Awards is incredible because it shows how much our activism style affects the larger chronic illness and disability community to nominate all of them.

Lastly, we want to thank YOU for all the endorsements for us! To win these awards would be a dream, and it will definitely give more exposure to InvisiYouth’s programming and in return, give us opportunities for charitable sponsorships and partnerships to reach even more older youth with chronic illnesses and disabilities around the world. So what’s next? Will Dominique, our video podcast series, and our Global Brand Leaders win these WEGO Health Awards? Time will tell and we will keep you in the loop, but nonetheless, nominations are so humbling and we are honored.

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!

Mighty Well and InvisiYouth Charity’s Chronic Illness Meet Up Takes on NYC

November 17, 2017

Last week, InvisiYouth Charity cohosted a fun hangout event in downtown New York City with longtime philanthropic friend Mighty Well, a fashionable medical accessories company, that was open to all young people with chronic illnesses and their friends and loved ones.

This meet-up was designed to bring together individuals with all types of chronic illnesses to meet new people, get some free swag, swap positive and funny illness stories, and get to know the missions of Mighty Well and InvisiYouth Charity better.

As Mighty Well promotes their company, build even more “friends in the fight” so the supporters (friends, family and caregivers) on the outside of illness can learn more supportive ways to communicate.

The meet-up was focused on the topic of relationships and chronic illness.

Both platonic and romantic, how to build and sustain relationships as older youth living with an illness or disability is one of the most asked questions for our community, especially InvisiYouth.

It was fun, interesting, and had lots of eye-opening moments and humor; that is key for both InvisiYouth and Mighty Well.

We are all about changing the narrative tone around chronic illness: that it is meant to find the brightness and humor in life’s challenges with honesty, not focus on the negatives and struggles.

The group was a big mix of ages, illnesses and relationships.  Some were couples, others singles, and some were friends coming to support.

Their illnesses even ranged from the visible and invisible; like Lyme disease, lupus, neurovascular conditions, POTS, connective tissue disorders and mental health challenges.

Being able to bring together the ‘healthy’ friends and loved ones was critical because it allowed others to learn from each other and see how different relationships can be formed when living with chronic illness.

For both InvisiYouth Charity and Mighty Well, meet ups and getting to know the older youth chronic illness and disability community is a main part of their work.

2018 will continue to grow in their philanthropic missions, with Mighty Well’s new products and InvisiYouth’s new programming and events, next year will be a great addition for both.

Keep up to date on all of what InvisiYouth Charity and Mighty Well have in store by following their social media:  InvisiYouth on social media at @invisiyouth and Mighty Well on Twitter @livemightywell and Instagram @mightywell_

And if you want to be part of InvisiYouth’s new programs and events, make sure to contact us and we’ll send you more information and even help you design your own InvisiYouth event or fun mini-fundraiser!

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! 

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.

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

December 30, 2018

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

So, let’s get real for a minute.

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

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

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

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

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

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

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

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

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

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

#4 Reminiscing About the Past Can Hurt Sometimes

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

#5 Let Yourself WallowBut You Only Get One Hour

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

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

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

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

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

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

#8 Body Positivity ≠ 24/7 Body Confidence

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

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

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

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

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

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

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

~Dominique

Spotlight Story Program: Shona Cobb’s Story

Meet Shona Cobb

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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