InvisiYouth Charity Shop Opens with first limited edition bracelets

November 30, 2021

After months of preparation, InvisiYouth launches the INVISIYOUTH CHARITY SHOP, featured on Etsy!

Welcome to the INVISIYOUTH CHARITY SHOP, featured on our Etsy store! A place where all the merch donates 100% of sales to InvisiYouth’s programs/resources AND you’re getting items that fuel our #subtleactivism vibe so you can raise awareness in a chic, minimalist way.

Buy yourself or someone you adore an InvisiYouth’s Subtle Activist Color Block Bracelet! These handmade bracelets are affordable, minimalist in style with our color-block yellow-grey style, gender neutral, adjustable and a great addition to any outfit!

Every bracelet is $4 and FREE SHIPPING WORLDWIDE with 100% of sales being donated to InvisiYouth’s program and resources that we provide for FREE year-round. So when you buy a bracelet, you’re essentially making a donation and getting a gift in return!

PLUS: EVERY bracelet is made and packaged by young adults living with chronic illness and disability in our community, so you’re supporting our nonprofit and supporting these hardworking volunteers!

And until January 31st, we’re matching our donations with bracelet giveaways! So if you donate any amount over $5 on our website (WWW.INVISIYOUTHCHARITY.COM/DONATE ), our team will give away one of our limited edition bracelets to a young person living with chronic illness/disability. So you can buy a bracelet…or a few…or make a donation so a bracelet can be donated to a deserving young person!

We want to SELL OUT of our limited edition subtle activist color-block bracelets, because every bracelet can be added to your collection and get the curiosity of others moving so you can raise awareness on the young adult chronic illness/disability community! One of our volunteers part of the shop team stated:

“For those introverts and ally supporters, buying a bracelet is a great way to support the community of young people living with chronic illnesses like me without making a large statement!”

Buy at www.etsy.com/shop/invisiyouthcharity and make sure to share our shop so more people can place their orders too! We thank you for your generosity, your support, and all your love for helping us raise awareness, raise funds, and provide more opportunities to the young adult chronic illness/disability community!

Please show some InvisiYouth love the InvisiYouth Charity Shop and buy our bracelet TODAY so you can make a direct impact supporting our small nonprofit and the young adults living with chronic illnesses and disabilities around the world that thrive when utilizing our free programs and resources!

InvisiYouth Announces Its Partnership with new Streetwear Brand, Nice Genes

February 2, 2021

The InvisiYouth Charity team is excited to announce its

partnership with the new streetwear brand, Nice Genes, as one of our new charitable sponsors.  What is unique about this apparel brand is its focus to connect since with youth culture so this next generation can become science advocates. Nice Genes has a goal to support the diverse community that is bringing awareness and aid to those of the rare disease community, and that creates a culture of next generation advocates positively impacting our world.

Founder and creator of Nice Genes, Jason Hong has made philanthropy an integral part of the apparel and merchandise he creates.  They partner with other organizations like National Organization for Rare Disorders, so we are grateful to join the Nice Genes community.

“Nice Genes is dedicated to making a positive impact for all by donating all of our profits to nonprofit organizations in need. …Customers have the option of choosing any nonprofit organization to donate to. If section is not filled, donations will be made to National Organization for Rare Disorders (NORD) and InvisiYouth.

When you purchase any of their merchandise, you get to donate 100% of their profits to InvisiYouth by simply typing in our name during your shopping selection. And if the section isn’t filled in, donations are divided between InvisiYouth and NORD (National Organization for Rare Disorders), so all products donated to organizations in need!

It is beyond exciting to get to mutually support this rare disease community by working with Nice Genes, and we love their apparel, so we know that you will also enjoy buying their merchandise to add to your collection, from their hoodies and sweatshirts, to t-shirts and hats.

Their hoodies and sweatshirts have great streetwear designs that you’ll love to wear, and their t-shirts and hats give you a variety of color options at great prices so you will be able to find something immediately to add to your wardrobe!

InvisiYouth prides itself on charitable sponsorship with brands that want to support our programs and resources aiding young adults in the chronic illness and disability community, and that is why we are honored to have Nice Genes partnering with InvisiYouth,” Dominique Viel, founder and executive director of InvisiYouth Charity states. We are thankful for the continuous financial support that our partnership with Nice Genes will bring, and we are excited to begin mutually supporting one another’s project and collaborate even more in the future as their brands grows.

Please show some InvisiYouth love to Nice Genes and buy their products today and choose InvisiYouth as the nonprofit organization to donate to in your shopping experience because when you get a cool product from Nice Genes, you are financially supporting InvisiYouth!

Help Save InvisiYouth’s Free Program and Resources by Supporting the Nonprofit’s Donation Campaign this Month

December 1, 2020

After a challenging year for the world with the COVID19 pandemic and its impact on the nonprofit community, InvisiYouth needs your help to keep our programs and resources FREE next year. And we have created our second donation campaign this year specifically to recognize the challenges many are facing financially that still want to give back. It is our campaign we call #GiveBackGrid, which is essentially our version of donation bingo going on all month long.

But InvisiYouth is upping the joy here because every single donor is AUTOMATICALLY entered to be one of two randomly selected winners of InvisiYouth gifts. That’s right, when you donate any amount, ONE TIME only, you are automatically in the running to win a giveaway. All our programs, resources and platforms are FREE for the hundreds of young adults with chronic illnesses and disabilities in over eight countries. But we cannot continue providing these programs without DONATIONS this month.

Founder and Executive Director of InvisiYouth Charity, Dominique Viel, states:

“Our annual leadership programs, virtual resources, and global interactive campaigns cannot continue being provided for free each month without your donations. And these programs have positively impacted the lives of thousands of teens and young adults living with chronic illnesses/disabilities so they have resources to create their own successful, fun and fulfilled lives.”

If you can’t afford to donate, PLEASE share this post with family, friends, your social media followers, and please ask them to donate to celebrate you this month. Pull together a group of friends, family or followers to make a GROUP donation. Here is how you do it:

1. Check out the #GiveBackGrid in our IG Story and pick any box with the donation amount of your choice.

2. Donate on our website, www.invisiyouthcharity.com/donate (type in that USD$ equivalent of your currency’s donation choice. It’s a Google search, and you can round out that donation amount. Quick and no fuss!)

3. You are automatically entered to win one of our TWO InvisiYouth treat bags.

4. We’ll cross off a box AND give you a special shout out thank you.

Truly, we need your donations to keep our annual programs going next year. Please, help us continue providing empowering programs for young adults with chronic illness/disability so they can thrive in life. Please donate any amount you can, even £3 or $5 is great, and share with your family, friends and followers to also give back and donate to support you too! We thank you lots for your donations and support this last month of 2020 because truly, all of your support has been such a shining light in a year of hardships and challenges.

Founder Dominique’s Blog Presents a New Guest Series titled Podcast Master Class Miniseries for this Autumn

September 8, 2020

InvisiYouth’s founder and executive director, Dominique Viel, wanted to release a new miniseries this autumn that highlighted a virtual program that’s a source of great entertainment, education and community within the world, it’s podcasts! All September long, founder Dominique’s Blog will release the Podcast Master Class Miniseries.

This seven part miniseries will feature five incredible podcast series and their stellar hosts. Also, it will feature two InvisiYouth team parts, one focusing on some of the InvisiYouth team’s favorite moments on our video podcast series, InvisiYouth Chat Sessions, and some of our favorite podcast series that we listen to!

The five podcast series being highlighted are:

Uninvisible Podcast, hosted by Lauren Freedman

Headcase Podcast, hosted by Stephanie Hoffmann

The Women Wave, hosted by Sterling Cates and Tricia Cleppe

Visibility Today, hosted by Laura Elliott

Made Visible Podcast, hosted by Harper Spero

We wanted to give our community advice and tips to get into podcasting, some life lessons these hosts have gain from their guests, and give you an opportunity to learn more!

We are so excited to share these five incredible podcast series and their wonderful hosts! Plus, at the end, we also going to give you some of the most memorable moments from the InvisiYouth team as we look back on all our episodes of InvisiYouth Chat Sessions.

Please give a listen to all these podcasts, and make sure to subscribe to them because their shows are so much fun! AND SUBSCRIBE to our video podcast series InvisiYouth Chat Sessions on all these platforms:

 

 

 

 

 

 

 

 

YouTube

Apple Podcasts

Google Play

Spotify

Stitcher

iHeart Radio

CastBox

Deezer

PlayerFM

InvisiYouth’s Popular Leadership Program Returns for its Third Year

August 31, 2020

We are proud to announce that we are entering our third annual #GlobalBrandLeaders Program with the class of 2020-2021!

InvisiYouth’s adores this creative leadership program because it is a way to not only work with such talented and passionate young adults around the world, but also our way to showcase the varieties of ways young people can thrive in life with any chronic illness or disability.

Specializing in activism, virtual advocacy, fundraising and motivation, all of our Global Brand Leaders are the epitome of what InvisiYouth Charity stands for, and why we’re a nonprofit supporting the “medically adult-ish™” to have access to virtual programs, resources and fun events that’ll guide them to keep thriving in life with any health struggles.

From Paralympians, YouTubers, dancers, models, wellness gurus, entrepreneurs, cooks, social media marketers, podcasters, writers, photographers, university students, teachers, public speakers, high school scholars, singers, actors, and political activists, our GBL group is diverse, unique and filled with warriors.

Our new class of game-changers will bring together some familiar faces and many new faces. With the popularity of InvisiYouth’s Global Brand Leaders Program growing immensely this year, research within the InvisiYouth team began in January, and founder Dominique made the executive decision to divide our GBL Program into three levels, or the three tiers. Our most elite tier, the #GBLApprentices who are returning GBLs from previous years and will be taking a full year long internship-style role with InvisiYouth’s leadership. Our familiar faces will be found in tier two with the #GBLAllStars who are going to be just has involved in all the fun of the GBL Program but take on that special mentorship role in the community since they have been selected to return and show off their amazing advocacy skills they’ve learned. And you have tier three, our #GBLAmbassadors which are all of the new game-changers that are taking their first steps into our GBL Program and learning all we have about community-building, advocacy, fundraising and marketing.

This year, InvisiYouth is also growing our leadership program into a new country with GBLs coming from the United States, Canada, the United Kingdom including England, Scotland and Wales, Australia and our newest addition… New Zealand!

That is SEVEN countries with InvisiYouth Global Brand Leaders!

Over the past two months, our social media platforms have been introducing our elite GBL Apprentices, our returning GBL All Stars, and our new GBL Ambassadors. On our newly renovated webpages in the “InvisiYouth Community” you will see separate pages for each of our groups, so please click on their names above to learn more.

You’ll be seeing all the waves of change we can bring when united in our invincible InvisiYouth community! We are about to kick some serious ass with this group of badass women because it’s time to shatter the stigmas of what chronic illness, mental health and disability are ‘supposed’ to look and be like. It’s the 3rd Annual InvisiYouth’s Global Brand Leaders Program!

InvisiYouth Announces Its Partnership with New Beauty Brand, I’m 4 Love

June 1, 2020

The InvisiYouth Charity team is proud and excited to announce its partnership with the new beauty brand, I’M 4 LOVE. A line of makeup that will not only hold its ingredients in high regard but also their belief that beauty and love are synonymous and need to be celebrated in all its diversity and uniqueness.

Created by the owner Lydia Smith, someone with backgrounds in nursing and a love of makeup, this beauty brand will be filled with products that make you look and feel as beautiful as your soul.

Their first product is True Lips Moisturizing Stick–a sheer glossy formula that shines, conditions and plumps your lips. Plus, you can wear it alone or with your favorite lip color, so this moisturizing stick is something you will want to add to your daily routine! And more lip colors will be coming, so get started with True Lips Moisturizing Stick and a portion of sales will be donated to support InvisiYouth.

When the partnership was announced, Smith stated:

“Our long-term goal is to start the I’M 4 LOVE Foundation, but in the meantime through our sales, we support women-run organizations with a message of love. We are honored to partner with InvisiYouth Charity, founded by the radiant Dominique Viel.”

InvisiYouth prides itself on gaining charitable sponsorship with brands that want to support our platform and programs aiding young adults in the chronic illness and disability community. To have the blessing of financial support from brands that believe in helping our mission for these deserving young people to have tools, programs and empowerment to thrive in the present with any health struggles is our ultimate goal.

And I’M 4 LOVE is a brand that is really utilizing their reach of the beauty consumers to let them buy products that will have a ripple effect of positive great good.

Please show some InvisiYouth love to I’M 4 LOVE and buy their products because each of your purchases will be able financially support InvisiYouth.

And by supporting both InvisiYouth and I’M 4 LOVE, you will be assisting both our brands to have a greater impact on women in the world. A major thank you to our new brand partnership, I’M 4 LOVE!

InvisiYouth Responds to COVID19 Outbreak with New Miniseries on Instagram Live

April 7, 2020

In response to the global COVID19 Pandemic, many of InvisiYouth’s young adults have needed weeks of quarantine and self-isolation to preserve their health and safety. And our virtual program, InvisiYouth Chat Sessions, is on temporary hiatus due to NYC’s shutdown. To keep supporting our community’s need for enlightenment and life management, InvisiYouth has created a miniseries, InvisiYouth’s Quarantine Coffee Break, available on Instagram Live.

It has been weeks for many of us living in this era of social distancing and quarantining, so it’s no surprise that for the chronic illness and disability community have needed to juggle a lot lately. Everywhere we look, there’s news about the COVID19 Pandemic, whether it’s updates on cases, symptoms to watch, or the severity of the virus. Hearing all of this can bring some worries, anxiety and restlessness.

So, it was vital for InvisiYouth to provide a virtual program that would bring some lightness, laughs and empowering ideas into your days at home. And since our video podcast series, InvisiYouth Chat Sessions—which films in NYC—needed to go on temporary hiatus, we had to get creative.

Thus, the creation of our new mini-series, InvisiYouth’s Quarantine Coffee Break, only available on our Instagram!!

Our team did not want to add to the stressors you’re feeling, and we are adamant that your medical advice should be coming from your health professional. As a result, our mini-series will ONLY be brightening up your days in the style of our podcast show, but in a jam-packed 20-minute chat show. You deserve to laugh, smile and feel motivated while staying safe and staying home, and InvisiYouth is providing you that!

Hosted by our wonderful founder, Dominique Viel, from her home in New Jersey, she’ll be virtually hanging out with some of her mega-talented friends as different special guests for each episode. So why not take a break, drink your favorite beverage, and enjoy new episodes EVERY WEEK!

They’ll be INSTAGRAM LIVE episodes that we’re hopefully saving to be IGTV videos too.  Our first episode will drop Friday, April 10th at 1pm EST, with British Lifestyle, Chronic Illness and Fitness blogger, Ali Hemsley, and we’ll keep you updated to catch each episode!

Spotlight Story Program: Meet Lauren Perry

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

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

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

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

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

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

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

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

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

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

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

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

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

Nothing surprises me anymore.

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

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

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

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

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

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

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

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

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

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

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

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

Spotlight Story Program: Scarlett Aylen’s Story

Meet Scarlett Aylen

Our latest Spotlight Story comes from across the Atlantic Ocean with a fresh take on empowerment and facing the obstacles that life can throw at us. We were so excited to hear from 20-year-old university student from the United Kingdom, Scarlett Aylen, when she submitted her story. Scarlett is an example that chronic illness and health struggles affect the entire person, both physically and mentally, and she advocates each young person should be supported as an entire being.  Her inner strength feeds into her organization RCASS, helping young people and their families after a scoliosis diagnosis. You learn so much through Scarlett’s story about resilience, advocacy, and finding ways to enjoy life.

It all started when I walked into a consulting room and saw my spine, looking horrifically and severely curved on a huge screen right in front of me. I was 12 and was diagnosed with severe scoliosis. I cried and cried to the point where the consultant and nurse had to let me leave the appointment without having one. I didn’t feel like a young girl, but now I see 12-year old’s and realized why my parents were so scared for me. I spent 9 months in and out of the worst time of my life, I was depressed and didn’t speak to my family. I changed.

I hid in a thick jumper and coat at school so nobody could see my deformed back, despite it being 30°C and summer. In the months leading up to the operation, my mental health continued to deteriorate, but the waiting list was preventing me from the operation I was desperate for. After the major surgery to fix the curve in my spine, the recovery was long. It took months. I was so scared to have water on my back. I remember so vividly having a panic attack when it was time to shower for the first time since the operation. It took me months to get into a swimming pool and I would insist on covering myself up. I couldn’t do sports anymore. I used to ride, swim and do triathlons competitively but I gave everything I spent my childhood doing, up. Every time I tried to exercise there was always an excuse. But I was on the road to recovery, so it was ok.

Unfortunately, this was just the start of the problems. I thought I would just get better. Then I started to realize I couldn’t breathe. At one point, it felt like I could barely breathe at all. I also started experiencing severe anxiety on return to school and fought with panic disorder for about a year. I went to the doctors on multiple occasions and each time they told me I was just experiencing breathlessness due to anxiety. I argued and finally got a referral to a pediatrician, who allergy tested me. She said my lungs were the age of a 70-year-old but again, it was just anxiety! Through my GCSE years, I had therapy and I thought the anxiety was gone. It was just hiding. I still could not breathe. Eventually I saw a respiratory specialist who diagnosed me with restrictive lung disease and asthma.  The scan showed that one of my lungs is half the size of the other and my heart is not in the same place as everyone else’s because of this, and that ¼ of my big lung wasn’t even working due to infection.

However, having someone take me seriously was a huge relief. I had special respiratory physiotherapy and now take medication for my lungs. Being me, I was unlucky again.

The respiratory specialist had found a screw in a CT scan of my lungs that was dangerously close to my heart and sent me back to the spinal surgeon. He told me the operation wasn’t urgent, but that he had cancelled someone’s surgery (who waited a year to have it) and that he wanted to do it tomorrow. I woke up screaming in pain. My shoulders and neck have never been the same since. The surgeon couldn’t find anything wrong in a scan afterwards, so he sent me to a pain specialist. He basically said that I had no reason to be in chronic pain so off I go. I went to a specialist and got 3 medications to help with the pain. I have 16 Botox injections every 6 months when I can afford them, and it is the only thing that relaxes my neck and shoulders. The way I would describe the pain is severe, chronic and incredibly tense. They were constantly in spasm, which was excruciating and incredibly tiring.

By the end of my further education, I had missed out on 8 months of school and college due to pain, anxiety and fatigue. I was in so much pain and anxiety during my final exams, that I landed myself in the ER the day before my last ones from a tachycardia attack where my heart sat at 190 BPM for 3 hours.  Luckily, I take medication for my heart and I am symptom free most of the time, but it again took years to diagnose since the GP dismissed palpitations and a fast heart rate as being ‘anxiety’.

Nowadays, I focus on what my body needs. Recently, I discovered that the fatigue I’d been having for years, that kept getting worse was probably a neurological condition called narcolepsy, after the GP just told me it was probably anxiety, but then tried to pass it off as ME (chronic fatigue syndrome) after one appointment. I am now getting treatment for this which is exciting!

One of the perks of dealing with conditions like mine over a long period of time (over 7 years now) is that it has allowed me to learn about myself and what works for me. I understand it now.  Before, I wouldn’t let myself rest if I was about to collapse from exhaustion, but now I give my body time to recover before I start doing things again. I have friends with ME and the tips they have given me for my conditions help me as well, even though I don’t have it.

If I have, what I call a ‘pain crisis’, where my pain is worse than the average daily pain I get anyway, I have learnt to stop absolutely everything. It is hard to do that when you have a lot of goals, but it is an important step towards managing your body. After I turned 17, I started realizing I couldn’t hide from doing the things my friends could do for the rest of my life. I plucked up some courage and started doing things like get back on a horse and going to the gym.

I took a gap year and decided that it wasn’t fair on young people who had to wait for scoliosis surgery to have no support before and after the operation, so I have decided to set up my own organization to help this and called it RCASS.

I want to help young people and their parents after a diagnosis of scoliosis. The end goal is to provide more support in the future and to register as a charity to help provide young people with opportunities to recover confidence after scoliosis surgery. It is still in the starting stage, but I can’t wait to work on it properly!

I took a gap year before I went to university and decided its purpose was to ‘challenge myself to lengths I had not done before’. I went travelling alone, I went up mountains, on hikes, skiing, jumping off cliffs, surfing, volunteering and many more activities. I am incredibly proud of myself, but I must admit, the pain was still there. My biggest achievement to date is building the confidence to wear a bikini on a beach or by a pool. I never used to wear a small amount of clothes, but gradually I have worked up and now I don’t browse the shops thinking about what can hide my back, I’d rather show it!

As for my mental health, I needed the gap year and it did me the world of good. I still have some wobbly moments sometimes, and the anxiety meant I flew home 3 times on my travelling. But overall, I feel that my experiences have made me 10 times as more empathetic, understanding and positive compared to what I would have been like if nothing had ever happened to me! Another life changing moment was when I was told ‘a problem shared is a problem solved’.

It isn’t always easy when it comes to other young people but when I got to about 16 everyone started understanding and now I am so lucky to have incredibly supportive friends after I explain my problems to them, they help me with lots of things that I wouldn’t have help with if I didn’t share my story.

I tend to joke about my past now, and although it has been a harrowing journey, I know I am the person I am today from the experience.  Time has taught me how to look after myself. Although I still have problems, I know how to deal with them both in a better mental mindset and physical one too.

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