Spotlight Story Program: Meet Lauren Perry

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

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

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

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

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

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

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

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

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

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

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

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

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

Nothing surprises me anymore.

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

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

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

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

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

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

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

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

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

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

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

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

Spotlight Story Program: Meet Jasmine Chen

Perseverance, energy, adaptability, joy and wisdom. These are all traits we try to supply to all our young adults in the InvisiYouth community, and all perfect descriptors of our newest Spotlight Story Program feature writer, Jasmine Chen. From New Jersey, Jasmine is not your average 28 year old because she’s also a double lung transplant warrior after dealing with RSV. Her chronic illnesses have given her the life experiences to look at the world with such an empathetic and passionate lens. With her eagerness to improve her daily life, Jasmine has advocated not only for her physical health, but also her mental health, empowering others in the benefits of therapy too. We are so excited for you to read Jasmine’s story, and learn her five life lessons that you can easily apply in your daily life too.

My name is Jasmine, I am 28 years old from New Jersey and in July, I will be two years post- double lung transplant. Despite all the challenges of the past two years (and a pandemic to top it off), it was the best decision I ever made, and managing this condition constantly reminds me of what really matters in life:  family, friends, and finding purpose.

Every year, my birthday would come around, and every year, I would blow on my candles and wish for the same thing: to have healthy lungs.  My chronic health journey began when I was three: a doctor’s visit turned into a hospitalization of six weeks; while under the hospital’s care and observation for pneumonia, I caught RSV (Respiratory Syncytial Virus). As a young child, I was much more vulnerable to the virus, and the RSV ravaged through my lungs in a short period of time.  Even though I won the battle, the aftermath of permanently scarred lungs turned into an ongoing war.  I was a confusing and rare case, and the doctors tentatively diagnosed me with Bronchiolitis Obliterans.

When I entered my double-digit years, I graduated from oxygen dependency around the clock, and began physically attending school part-time.  Managing a depleted lung function on top of asthma and a defenseless immune system, my head was always calculating ways to save energy, maximize efficiency, and survive: I would gauge whether the energy spent trekking to my locker outweighed the expense of carrying around a heavy textbook.  My normal speed was a slower pace than the average student and I didn’t tend to have the breath to converse, and so I found myself walking alone a lot.

College made it more apparent that invisible illness was both a blessing and a curse.  Being able to blend in with the crowd around campus helped because it did not garner any unwanted attention.  On the other hand, I found myself often struggling to convince professors, friends, and people in general that I had a disability. A lack of visible proof resulted in many occasions where ignorance fed into a gaslighting culture and my imposter syndrome constantly minimized my suffering.

Dealing with society’s ignorance and treatment of my disability is on par, if not arguably worse, then managing the health struggles itself. 

For example, there were times I had to choose between my health and grades when a college professor refused to allow me to miss the final exam when I was ill.  There was the time HR called me in because an anonymous coworker reported me for “abusing” my handicap spot. Did I feel anger, resentment, and frustration when these situations happened?  Absolutely. Accepting that these things will happen and learning not to get stuck in it is a lifelong challenge.

Here are some of the things I would tell my younger self if I could:

#1: Learn to self-advocate. Over time, I learned to make my thoughts and concerns louder, whether that was dealing with coworkers, nurses and doctors, or insurance.  I used to believe the right way to be humble was by obediently following directions, and trusting those in charge, but eventually I realized it was important to be assertive and vocal while also doing your own research and thinking for yourself: it is possible to both retain humility and make your voice heard.

#2: Be gentle with yourself. You are more resilient than you think. People with chronic illnesses tend to experience the best and worst of life. Sometimes life throws curveballs at you, and many things are simply out of your control.  You will meet some unfriendly people, face complicated health issues, and have bad days. But you will also meet some amazing human beings, overcome those challenges, and have great days.

#3: Do not be afraid to seek help. Therapy is a lot like dating: when you meet the right one, it can be cathartic and life-changing. I built up the courage to overcome the stigma of therapy and sorted through several therapists before I found the right one. I began therapy during a dark period in college where I felt isolated, lost, and seriously wondered what the point of carrying on was. These sessions not only helped me navigate through the mental roller coaster of pre- and post- lung transplant, but also forced me to confront my own self-doubts and fears, ultimately empowering me to find and create the life I envision for myself (this will always be a work-in-progress).

#4: They are not a reflection of your self-worth. The level of your academics, the number of friends you have, and the experiences you may be deprived of are not your fault. You will meet various unique hurdles in life, whether they be people or circumstances. The amount of classes I missed, especially during the winter, was reflected in my grades.  There were friendships that died instantly or faded over time, whether they be because of betrayal, rejection, ignorance, or isolation.

Over time, this perpetuated a greater reluctance to disclose my health condition, for fear people would keep their distance once they knew.  But none of these difficult relationships or experiences define who you are or what your value is as a human being.

#5: You are the author, director, and CEO of your own identity. “She doesn’t like to mix negative and positive energy…”  This is a quote from one of my favorite movies, 50/50 (one of the few realistic movies that does not feed into an “inspiration porn” portrayal of illness).  Adam explains to his friend Kyle that his girlfriend has trouble dealing with the fact that he has cancer and refuses to mix her normal, able-bodied lifestyle (“positive energy”) with the “negative energy” of the hospital, which was a culmination of Adam’s illness and pain. For the longest time, I avoided using my handicap sign because I denied that I needed it.

I wanted one insignificant part of my life roaming the parking lots to be separate from my chronic illness life: instead, I gave myself the unnecessary burden of trying to live two identities.  But the truth is, I don’t have to choose between me who is ill and the parts of me that aren’t.  I am both.  I am just me: You are the only one who gets to define who you are. 

After some post-transplant complications, today I am at roughly 75% lung function as opposed to 16%.  I take a plethora of pills on a daily schedule, I get my blood drawn regularly, I converse frequently with my doctors and undergo whatever procedures are required, I have “moon-face” from steroids- occasionally, I argue with insurance.

But I am reborn in some sense, experiencing everything with new lungs and lung capacity I never had before.  I’ve learned to meditate and savor moments like when I’m safely at home, appreciating the silence and the privacy of my room- things I do not have when hospitalized.

Everything I’ve gone through has grown greater my empathy: I see the hidden pain in others’ eyes because I recognize it so clearly in my own.”- Melinda Means.

My first time hiking up three miles, first time walking up and down the stairs more than twice a day, and more recently, the first time dancing for a couple hours at one of my best friend’s weddings. Looking forward to many more first times.

 

Spotlight Story Program: Meet Isabella McCray

Letting go of the illusion, and fully embracing the life you’re living now. That’s a prime mindset InvisiYouth advocates through its programs, and it’s a focal point of our latest Spotlight Story Program feature writer’s daily life. Say hello to the American stellar teen, Isabella McCray, who has not only celebrated a high school AND Associates degree graduation this month, but uses her platform to raise awareness of the chronic illness she lives with, Lupus. This autoimmune disease is life-altering, and since her pre-teens into her later teen years Isabella has needed to balance her health changes with her life changes. Isabella’s journey with Lupus shares her vulnerable strength and how her reclaimed her bravery through her flare-ups, even embracing the pains to live life at its fullest. Now with eyes set on being a pediatric nurse, Isabella is allowing her voice to encourage community connectivity and support, while sharing what it’s like living and managing Lupus. And with May being Lupus Awareness Month, we knew having Isabella share her story would educate and empower many other teens in the Lupus and autoimmune disease community! 

Hi, my name is Isabella McCray and I am a chronic illness and Lupus advocate, inspiring and encouraging young adults like me! I use my platform to talk about all things chronic illness and spread the word about what it’s like living and managing Lupus.

When I was little, I went to preschool and my teacher used to always rub and massage my legs because my legs were always sore. Eventually, it became difficult to run and play, to climb stairs, and if I had exposure to sunlight/heat, I would break out in hives.

I went to my pediatrician and she diagnosed me with growing pains.

Fast forward 2014, I saw visibly swollen glands and I visited my pediatrician again and she referred me to an ENT doctor. He discovered in my blood some abnormalities and referred me to my present pediatric rheumatologist. He ordered various blood tests and on my next visit with him, I was diagnosed with Lupus SLE.

I recall searching what it was and reading about the symptoms. I experienced each of them. Joint pain, headaches, fatigue, butterfly rash, hair loss, etc. I was just 11 when I was diagnosed with Lupus. I was a young child and I didn’t know how to feel or how to accept my diagnosis. I also didn’t know that my life would change forever.

In the years following, I learned to managed my chronic illness; that had no cure. My classmates didn’t know because I didn’t want them to view me differently. However, it was the year 2017  when my journey crossed and I discovered new bravery for every aspect of my life. I had my first flare-up; I was home-bound from school for 5 months, and the most time I was admitted in the hospital being 2 weeks. I had to tell my peers about my condition because of my absences. It was at that point that I was at my lowest.

I didn’t have the bravery I held when I was little. I was in unbearable pain and I was hopeless of things getting better. I started losing my hair, which was 14 inches long and my appearance changed. I consulted with a chronic illness hairstylist, who specialized in haircuts for Lupus patients. I had dreadlocks since I was 4 years old and getting them cut, I felt like I lost one of the most important parts of what made me.

In light of my insecurities and challenges, I decided to cut my hair.  I immediately made adjustments to my schedule and my classifications with my peers.

This did not sit well with some and I was subjected to bullying. I experienced emotional, physical, and mental pain but I never gave up. It wasn’t that giving up was an option because it was.

However, I didn’t let the pain and suffering I endured break me. Instead, I started embracing the pain and turning it into strength and inspiration.

Experiencing a life-changing illness that changes your outlook on everything is stressful and overwhelming. That is why I use my voice to bring awareness to chronic illnesses and inspire others in this community to hold on and if you feel like giving up, you have a whole community to back you up.

Despite our limitations, we can develop patience and discover hope in the worst of situations. Because battling a life-altering illness is a tough journey and changing directions in life is not a bad decision. It just allows you to change your story and experience the high and lows with an amazing support system on social media.

Being part of a community so empowering and influential, and it encouraged me to share my voice and interact with others. I have grown and matured to know my worth and who I am, personally. I am compassionate, caring, sweet, understanding, and forgiving! I experienced so many things in my childhood that I should’ve experienced now being a young adult. I was such a private person growing up, but making my diagnoses public was one of the best decisions I made.

I had to face unknown experiences, having hope and strength and the mindset of coming out of these experiences even stronger. I became an advocate and not only for chronic illnesses, but also for my education as well.

I am currently a senior in high school, graduating with my high school diploma and Associates of Arts degree. Being afforded the opportunity of encountering many doctors and nurses on my various visits to the hospital inspired me to pursue and further my education in nursing to hopefully become a pediatric nurse.

During a visit with my specialist, my mom saw a pamphlet about Make-A-Wish Foundation. She reached out and contacted them about my journey and how far I’ve come and they wanted to have a meeting with my mom and I. Personally, whatever my wish was, I wanted to bring awareness to Lupus.  My Wish was to meet the cast of Good Morning America. Robin Roberts is an inspiring role model who I still admire today. My wish was granted, after several months, and it was an experience I will never forget!

Throughout my journey, I learned to let go of the illusion that it could have been different and understand my purpose now. It’s not every day you’re going to feel your best, and I can’t even count how many pep talks I have with my body every day to function and “get it together”!

The funny part is I’m still the same as before, I’m just diagnosed with a life-changing illness that presents challenges. I’m just stronger, wiser, more compassionate, and my sense of humor is a bit dark.

People manage their chronic illness differently, it’s whatever works for you. At the end of the day, you made it, and that itself is a victory. Know your limitations, enjoy life, take your medications, be yourself, and most of all, rest and breathe because you are here, now.

Spotlight Story Program: Meet Rachel Hoy

Meet Rachel Hoy

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Goals are great but values are key.

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

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

Secondly, you are not alone.

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

And lastly, YOU know YOU better than anyone!

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

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

 

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.

InvisiYouth Partners Up with Mighty Well for Another New York City Meetup

September 1, 2019 

Last month, InvisiYouth partnered up with our friends at Mighty Well for another meetup. This time it was in Midtown New York City at the Le Pain Quotidien Bryant ParkMighty Well is n athleisure company that makes medical accessory products designed to put strength, confidence and mobility back into the toolkit of spoonies and anyone else coping with ah health setback, so style and function are blended together.  This is our second year cohosting a meetup with Mighty Well, so perhaps this can be an annual alliance—what do you think?

InvisiEvents are unique for exactly all the reasons you can see above: they are fun, free, nontraditional, quirky, empowering, and philanthropic. Why not make hanging out with your friends and family an opportunity to also fundraise for charity?

Why not use your love of hanging out with friends and add a fundraiser element to it—so you pay it forward without having any hassle of developing an event from the ground up?

Why not host a hangout and meet an entire new community of awesome young adults while also fundraising?

Why not partner up with fellow nonprofits and businesses to bring empowerment and kickass joy to lots of young adults to multiple our outreach?

The answer to these questions is simple: InvisiEvents is going to international and we’re making our hangouts and our style of events regular throughout the year! But to do this…we need your help!

Many of you told us which cities you want InvisiYouth to come to next, and we need all your support to bring this to life! We need YOU to help be our cohosts, help us come to your cities and make the events a reality! Whether a brunch, yoga class, cooking day, movie night, sporting activity, painting class, coffee house meetup, wine tasting, or something totally different, we want to know what venues, what locations we can go to next.

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!

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!

InvisiYouth Launches its First Annual Global Brand Leaders Program

March 30, 2018

This month, InvisiYouth Charity launched its first ever Global Brand Leader Program, a coalition that consisted of accomplished teens and young adults from across the United States, Canada and the United Kingdom, which focuses on activism and fundraising campaigns.

These are a select group of youth that are all leaders in their communities, from healthcare advocates and disability activists, YouTubers and social media influencers, to business owners and philanthropists. What unites them is not their diagnoses, but rather their passion to pay it forward, empower, crack stigmas and make a difference, all the while being young adults. As InvisiYouth coins the term “medically adult-ish”™ we know all our Global Brand Leaders fall into that community that we support their our lifestyle and confidence empowerment and programming.

All our Brand Leaders are motivated and fun-loving individuals who contribute to their communities and in the health sector and beyond, and will work with InvisiYouth to mutually promote empowerment and raise funds for InvisiYouth’s programs that assist and embolden all young adults living with any illness or disability.

And they get access to all our merchandise, partnership gifts, and programs before anyone else! The objective: further InvisiYouth’s mission into their neighborhoods, to broaden awareness and access to supportive InvisiYouth events and programs can continue to be provided for our growing international young adult network.

What inspired this program was our desire to get involved with even more youth around the world that connect with InvisiYouth and want to expand our reach.  We do so much work virtually, host events in multiple cities and it has been our desire to connect even more with the young adults that support InvisiYouth.

What better way than to build a coalition of young adult rebel game-changers that will expand our grassroots efforts to support even more people in different countries, to bring our programs and events to more cities, and to support more youth. And we want to mutually support all the incredible work that is being done by so many young adults too, promoting their work to the world.

That is a major part of why we decided to create the Global Brand Leaders Program: we wanted to bring more awareness and support to the brilliant work and advocacy that’s being done by countless youth in so many countries, in hopes that by uniting them within InvisiYouth Charity—an organization that’s non-illness specific—we can tackle and overcome even more misconceptions about different illnesses and disabilities, both physical and mental.

Our motto: when we get this group to collaboratively work and motivate each other’s projects, to expand our own within them, InvisiYouth will be able to empower all young adults to gain their voice, confidence and tools to keep living the most fun and fulfilled lives with any health struggles.

Our Global Brand Leader Program is annual, and we’re excited to have an entire new group joining this 2018-2019 class in May…so if YOU want to become a Brand Leader, to support InvisiYouth’s mission, get involved in some philanthropy, and get your projects a major platform of international exposure, we want to hear from you.  Contact us if you, or a friend you know, would be a great Brand Leader!

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!