Spotlight Story Program: Meet Meghan Smith

April is National Donate Life in America, and it’s a critical time to raise awareness on not only to become an organ donor, but also to learn the stories of those that have received this lifesaving transplants. One of those receipts is Maryland native Meghan Smith, a marketing executive that has used Instagram for our favorite thing…raising awareness, changing misconceptions, and showing how awesome and fun life can be with any health struggles. After a few years of health issues, it was discovered Meghan had liver disease and was in need of a transplant. Luckily, her uncle was a match to donate a portion of his liver! Meghan is such a transparent advocate because she shares the realness of post-transplant life, and all the medications and adjustments you make in life to adapt and excel. There’s no singular way to look or live as a young person with health struggle, and Meghan–who’s now a Donate Life Ambassador–is using her growing platform to give a fresh look on how incredible , fun and fulfilling life can be!

My name is Meghan and I am a 29 year old from Baltimore, MD. I work as a marketing executive for a global affiliate marketing company, and in my spare time enjoy traveling, reading, shopping, playing with my dog and spending time with friends and family. Growing up, I had a fairly normal and typical childhood. I lived in the suburbs outside of Baltimore with my mom, dad and younger brother, was active in dance and softball, and was generally healthy.

When I was 19 years old, I was studying at the University of Maryland when I started to develop abdominal pain and severe itchiness. I spent most of my college years going to different doctors trying to figure out the cause. Finally, at 22 I met a doctor at Johns Hopkins who determined the issue was caused by my liver. Around this time, my younger brother was 19 and started developing similar symptoms. For whatever reason, his liver disease had progressed much faster and he was in liver failure with liver cancer. He was listed for liver transplant and thanks to the generosity of one of my dad’s previous co-workers, received a living donor liver transplant at the age of 21.

I continued to be monitored by my hepatology team, and while numerous genetic tests were done to try to figure out the cause of our liver disease, there was never a match. In August of 2019 it was determined that it was time for me to be listed for liver transplant. Numerous people kindly reached out about being tested to be my donor. My uncle was the first person to undergo testing, and surprisingly he was a perfect match! It is very rare for the first person to be tested to be a match.

On December 10 2019, I received the amazing gift of a second chance at life thanks to my uncle donating a part of his liver to me.

Overall surgery and recovery went very well for the both of us. I spent two weeks in the hospital and was able to go home on December 24th, just in time for Christmas.

Unfortunately, two days later I developed an infection and had to be re-admitted to the hospital. Because my brother had gone through transplant before me, I was aware that transplant recovery is a process full of ups and downs along the way.

Once I was released from the hospital, I continued to recover and adjust to my new post-transplant life. This included taking a large number of medications multiple times a day to avoid rejection and infections, monitoring my vitals every day, and getting blood work multiple times a week.

I gradually built up to walking more often and getting out of the house more frequently. I was able to return to work at the end of February 2020 on a part-time basis, working up to full-time over the following months. I am incredibly lucky to work for a company that has been so supportive throughout my entire transplant process, and makes the health of their employees a priority.

Post-transplant I became a Donate Life Ambassador to help educate others on organ donation and encourage them to register to be an organ donor.

I’ve found that there are still many myths and misconceptions around organ donation and it is not discussed nearly enough, especially within my age group.

Almost 114,000 people in the United States are currently on the waiting list for a life-saving organ transplant, and on average 20 people die a day every day from the lack of available organs for transplant. I’m one of the lucky ones who received a transplant, and am inspired to help make the waiting list smaller and smaller until it is eventually 0.  

I’ve been using Instagram as a platform to share my transplant story and educate others on what it is like being an immunocompromised person during the COVID-19 pandemic. I think it is helpful to see that while someone may look “young and healthy” this may not always be the case, and to put a face to the people whose lives can be saved from following social-distancing measures and flattening the curve of the spread of coronavirus.

Throughout my transplant and now the COVID-19 pandemic, I’m often asked how I remain so positive given the circumstances.

My answer is pretty simple – I do what I can to protect myself and keep myself safe, but don’t worry over the things that are out of my control. I would offer the same advice to anyone who is feeling anxious during this time of unprecedented illness and uncertainty; do the things that have been recommended – wash your hands, stay inside as much as possible, practice social-distancing – but don’t let the thought of contracting the coronavirus consume you.

Take comfort in knowing you are doing everything you can to protect yourself and others, and use this time to practice self-care, pick up a new hobby, or do something you enjoy.

 

Spotlight Story Program: Meet Abbie Stapleton

In honor of Endometriosis Awareness Month, we are honored to have one of our GBL Ambassadors from England, Abbie Stapleton, sharing her health journey and some major life tips that will be fueling you to bring kindness into your life. Founder of the blog and Instagram platform, Cheerfully Live, Abbie has fused her personal experience going through the long diagnosis process with her joyful content that’s uniquely styled to provide relatable advice with empowering young adults in this chronic illness community. You will not only learn a lot about Abbie’s diagnosis journey with Endometriosis as a teen dealing with medical professionals not taking her symptoms seriously, but you will also learn how Abbie has preserved and uses her experiences to motivate in this empowered community of wonderful women around the world!  Now living with other diagnoses like Fibromyalgia and Costochondritis and Interstitial Cystitis, Abbie’s wide range of life experience lets her connect with many, and her platform truly is unique and joyful all her own.

Hi I’m Abbie, the founder of the Cheerfully Live blog and Instagram.

When I was 14, I experienced my first episode of excruciating pain, little did I know that I would have debilitating pain for the rest of my life. Every month, my periods would come and I would be bed-bound, unable to walk, fainting, with nothing working to ease my pain. I was back and forth seeing healthcare professionals month after month.

Every time I was told nothing was wrong.

My tests would come back clear and I was always dismissed as being the “unlucky one”, told I had a “low pain threshold” and that it was “part of being a woman”. I was even once asked by a doctor “are you sure you are not over-exaggerating?”. It wasn’t until my pain became chronic in December 2018, that Endometriosis started being investigated. I was sent from urology at first as they thought I was having urine and kidney infections that just wouldn’t clear, but then they realised my pain was more likely related to Endometriosis.

But when I saw a gynecologist, I was told that I could “never have severe Endometriosis because I was too young”. I pushed for an MRI to rule that out and to her surprise, my scans showed severe, deep-infiltrating Endometriosis. The relief I received after I got my results was huge! After years of gaslighting from healthcare professionals and feeling like the pain was all in my head, I realised my pain was real!

I was immediately referred to an Endometriosis specialist who tried me on the mini pill for 6 months, but unfortunately my pain only got worse. I finally had Endometriosis excision surgery with an Endometriosis specialist in December 2020, a year after being put on the waiting list. They found Endometriosis all over my uterus, left ovary, my bowel, bladder and both my kidney ureters.

During all of this I was also diagnosed with Fibromyalgia and Costochondritis and during my Endometriosis surgery I had a cystoscopy which revealed my bladder was chronically inflamed and that I had Interstitial Cystitis (also known as Bladder Pain Syndrome). Thankfully I’m now on the road to recovery and feeling some relief from my excision surgery, however I’m also now undergoing investigations for possible Fowler’s Syndrome and PoTS (Postural Orthostatic Tachycardia Syndrome).

When I was being investigated for Endometriosis, I needed a place where I could speak to others who were also going through the same thing, it was an incredibly challenging time, not only on my physical health but also my mental health. So that’s when I set up my blog and Instagram Cheerfully Live. I used my platform to document my journey, chat to others who were going through the same as me and share any advice which had helped me whilst going through the diagnosis process.

I’m so thankful for this community and my little platform – I’ve not only been able to support so many women in getting an Endometriosis diagnosis, I’ve encouraged them throughout their journey and shared helpful advice. I’ve also found comfort through everyone’s kind words and knowledge.

I’ve learnt so much about many different chronic illnesses and how best to support others, which has been invaluable!

There’s been so many amazing opportunities since starting Cheerfully Live such as becoming a GBL for InvisiYouth, speaking on the radio to share my story and collaborating with many amazing brands, charities and companies on raising further awareness for chronic illness!

And lastly, living with Endometriosis or any chronic illness is hard and so I wanted to share with you a few top tips that I’ve learnt along the way that have helped me cope living with my illnesses, both when advocating for yourself in medical settings and just in general life:

  1. The biggest piece of advice I could give is to get yourself invested into the chronic illness community! There is such a wonderful presence online of people sharing the realities of living with chronic illnesses on Instagram, but Facebook is also amazing for joining different groups that share lots of helpful advice. Also, Endometriosis UK offers face-to-face support groups, as well as lots of accurate information, so I’d definitely recommend their website, it’s a great resource.
  2. Research and really understand your condition, so that you are best able to advocate for yourself.
  3. Be honest and open with those you trust around you. Allow people to really see what it’s like living with your chronic illness, let people in, allow them to help and support you!
  4. If you are struggling to get healthcare professionals to listen or feel like you aren’t able to get answers – keep going and trust your instincts! If you know what you are experiencing is not normal, please keep fighting and advocating for yourself.

Being diagnosed with many different chronic illnesses has definitely made me the person I am today and in a way I’m grateful for the experiences and resilience that having a chronic illness has given me! I’m a much stronger person than I used to be 3 years ago, I am more empathetic and understanding of people’s situations. I fully understand now how debilitating fatigue and living with pain every day can be, but also now realise that you can’t always see on the surface that people are struggling.

So the main message of this piece is to remind you to be kind (especially to yourself) – you never know what someone might be struggling with under the surface. Your kindness and empathy might just change someone’s day, maybe even their life! So don’t wait to be kind, be kind today!

Spotlight Story Program: Meet Caitlyn Fulton

Meet Caitlyn Fulton

Growing up in Scotland with cerebral palsy, Caitlyn Fulton has challenged herself to not only become her biggest cheerleader for her daily life, but to take her hobbies and bring them into the forefront of the work and activism she does. Having studied music in university and being a model, Caitlyn is constantly free in using media and art to break stigmas while also empowering other young people that they can find their inner strength in the things they love to do. While Caitlyn’s CP doesn’t define her, it gives her a lens to tackle life and achieve her goals, and we’re proud that she’s a GBL-All Star in Caitlyn’s second year working with InvisiYouth in our leadership program! Caitlyn gives so much good advice your young adults to finds ways to enjoy life even in those medical settings, and how to have your chronic illness/disability be not your sole identifier but one of the traits that make you unique!

Hi! My name is Caitlyn, I’m 20 from Scotland. I was born premature and as a result was diagnosed with Cerebral Palsy. CP is a neurological condition which is caused by damage to the brain. For me, CP effects my balance and coordination.

I’ve used my health journey in my work by exploring the things I love, like my passion for music. I studied it at Diploma level [in university], and alongside music as a whole, I’m a vocalist at heart and love to sing. I can just be me and not think of my condition; it’s a freeing feeling of enjoyment too.

Secondly, I’ve used my health journey to inspire others by becoming a model—signed with Zebedee Talent—breaking down the barriers and stigmas about disability that the fashion and media industry hold.

It allows me to challenge stigmas on disability and raising awareness of disabled people in wheelchairs specifically by being seen in a positive light and that’s what I’m aiming for! There’s still a long way to go for the industry to be completely inclusive but in the last couple of years there’s been a real positive change within – step/wheel in the right direction.

I also play Boccia (a Paralympic sport) with a recognised team in Glasgow as part of Scottish Disability Sport. By doing so, not only am I raising awareness of disability but also women in sport too as it’s a rather male-dominated field.

Writing/blogging is recent addition but I like writing about topics that are important to me, such as disability rights and my hobbies which hopefully resonates with other young people as it’s great for them to know others out there like myself feel the same way as them. Through my health journey, I’ve grown in knowing I shouldn’t feel bad for having Cerebral Palsy. It makes me who I am, though it doesn’t define me. I wouldn’t be the person I am today if I was non-disabled and I don’t know if I would want to be a totally different person – I’m happy being in the skin I’m in because I’m unique.

I’ve found ways to support others by sharing similar experiences and being a source of encouragement that while yes, life throws a lot of challenges, I always tackle them head on and think there’s always a reason why. I’m a true believer in the phrase, “things happen for a reason’.”

It’s been great having support groups too, connecting with others who have the same conditions and interests as myself. Social media is certainly a great tool to connect and interact. Especially with the likes of InvisiYouth, it’s been brilliant being part of such a great organisation and connecting with other young people worldwide.

When I look at my experiences in medical settings, there’s things I’ve learned that I’d love to share with others to improve their experiences. Even if it’s your first appointment in a new hospital where you’ve been referred for treatment, changing consultants or moving up from child to adult services -I know how daunting all of this can be as I’ve experienced it first hand – become familiar with your surroundings, get to know the nurses/staff who’ll be caring for you if its procedure-related.

Also bring home comforts, items that make you feel calm.

Whenever I went in for operations knowing it would be a good few weeks before going home, it helped knowing who the team members were that would have me in their care and over time there’s a bond that’s created. It’s bittersweet going home, I always felt sad saying goodbye when it was time to go yet it was a great feeling to know I was on the right track and made great progress.

In your daily life, know that your condition doesn’t defy you. Yes, it’s part of you but your worth so much more with the interests you have, outlays that shaped you, make you who you are. Dealing with my health has shaped me in knowing that I’ll experience many hurdles in life but I’ll always get through them no matter what. As I’ve gotten older I don’t feel embarrassed about having a disability and now I embrace it—it’s my superpower and I have a story to tell.

My main message: There will be good and bad days but know that your condition makes you who you are. Strive to be the best version of yourself, make the most of it.

I always say to myself ‘I was given this life because I was strong enough to live it’: strong enough to the face the battles that come my way and cherish the moments in live that are to be remembered. Look your bad days in the eye and know you’ll overcome them, maybe not tomorrow or the next day but you will achieve. Whenever you feel good in yourself, you can get through it all and survived another day, that’s what I tell myself and you should too – be proud!

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.

Spotlight Story Program: Devri Velazquez’s Story

Meet Devri Velazquez

Our latest Spotlight Story comes from someone we’ve adored for over a year now.  She’s not only got one of the best Instagram aesthetics we’ve ever seen, but she also has found a real niche for combining artistry with health activism. It is beauty and wellness editor and writer, Devri Velazquez.  Whether she is in Texas, New York City (where our founder, Dominique got to meet her), or Chicago, Devri has maintained her constant push for awareness on the life of a becoming an adult while living with chronic illness, specifically when you’re becoming your own person with invisible illness.

At 20 years old, Devri was diagnosed with a rare autoimmune vascular disease called Takayasu’s Disease. This is “a rare type of vasculitis, a group of disorders that cause blood vessel inflammation. In Takayasu’s, the inflammation damages the aorta—the large artery that carries blood from your heart to the rest of your body—and its main branches. For Devri, it took a series of strange flu-like symptoms and within a few weeks, her diagnosis was found.

Like thousands of the InvisiYouth community, Devri was diagnosed as a young adult, and that is a time in life when you are still discovering so much of who you are, and where you’d like your life to go.

I was 20 when I was diagnosed, so I feel like I had to grow up and mature soon than a lot of people I knew,” Devri said. “I had to quit taking certain risks that young people around me weren’t anywhere close to stopping. I take my self-care seriously, as my life depends on setting healthy boundaries.”

This is an experience that so many older youth have to deal with when maintaining their friendships while taking care of their health needs.

Self-care needs to be a requirement when you’re living with chronic illness instead of just a personal motivator.

Devri’s health journey has absolutely not only shaped the way she lives her daily life, but also how she does her work as a writer and editor on beauty and wellness, which everyone can experience on her website.  “I live and breathe survival everyday, in the places I go and the people I meet,” she said. “This is my lifestyle, learning everyday how to cope with constant pain that fluctuates by the hour. I pour my heart and passion into everything I do because I try not to take a single moment for granted.

Living with chronic illness takes so much daily energy, so when you’re able to achieve your goals, there is an extra large dose of enjoyment that can be felt. Like Devri points out, it completely alters the way you adapt to each and every day based on how your body is feeling and what you are capable of doing. And while that could be a focus of negativity at the challenges life with chronic illness presents, Devri is also able to see how her diagnosis has also given her new perspectives on life.

I always knew I was strong, but this has made me feel unbreakable. Nothing on this Earth and no person’s words or actions could ever hurt me as much as my body does on a daily basis, so I have learned to be more open-minded to a lot of things and not take certain situations as seriously. Everything is temporary, nothing is permanent, so relish the good moments, and know that the bad ones will pass.

There is so much to get empowered with from Devri’s mentality on her health journey. She’s right: no external factors in life can be as damaging as chronic illness is to your health, so you are actually a lot stronger than you think. Devri makes such a fantastic point: when you are having bad health days, you need to remember everything is temporary and with inner strength and willpower, you can to push those bad health days.

This is something we definitely get to experience through Devri’s social media activism on her Instagram account. Another trait of Devri’s that we all adore at InvisiYouth Charity is her complete vulnerability and belief that by sharing her medical journey, she can not only help others but also learn and grow herself.

Vulnerability is something that has help me accept and embrace the illness that my body carries,” Devri said. “I don’t feel defined by it, but it’s a part of my story now, and I’m not ashamed. I’m actually pretty proud of how well I carry this burden. Being open to your community—family, friends, colleagues—is so important, for your own mental health as well as their understanding and compassion in your journey.

What Devri touches on a couple of critical factors every young adult with chronic illness needs to know.  First, is the understanding that we are never defined by our illnesses or disability, but rather they are part of our description. Our health is not who we are, but rather it is part of the way we view our life and world around us, and that is not anything we should be ashamed of.

Second, Devri mentions something InvisiYouth always promotes, and that is the fact that a support network is critical to our daily success in life. Our family, friends and coworkers/classmates, they are all the people that help us get through the bad days, and celebrate the good ones.

This amazing young woman is filled with knowledge, realness and motivation. Not to mention, some of the best writing and photography we ever see! So when we asked Devri what her main message in life for other with chronic illness would be, it is no surprise that Devri would give the best.

Be your biggest advocate,” Devri said. “Learn how to say ‘no’ with confidence. If something doesn’t feel right—an interaction with another person, an environment, a job—it is okay to walk away from it. Do what your gut instinct tells you to do, just trust it with everything and then respond accordingly. That’s your mind, body and soul aligning to work in the favor of your higher self.”

Spotlight Story Program: Rachel Mayo’s Story

Meet Rachel Mayo

As a university freshman, Rachel was diagnosed with Type 1 Diabetes, and it changed her way of way. But Rachel decided to take her new diagnosis and not just better her life, but motivate others with T1D to do the same. And she’s been doing that across the United States ever since. Plus…we’re thrilled Rachel will keep working with InvisiYouth as 2018 continues.

I grew up full of energy, always going from one thing to the next, without a need to hit the “slow down” button.

As a freshman in college, when it started to require more and more energy to do basic things, like walk to class, sit through class, even, I began to worry a little. Why did I need a three-hour nap after my 50-minute English class, when just months before, I was fine getting only 50 minutes of sleep every night?

“Worried” probably isn’t even the right word. I just noticed the difference. Since my mom worked for a general physician, I decided to get a general check-up. I figured my hormones were just out of whack, and as soon as I was relieved of the stress of my semester and moved back home for the summer, I would return to normal.

It’s no surprise that was not the cure for whatever was wrong with me. (That would make for an awfully boring story, don’t you think?) The day after my last final of my freshman year, I went to the doctor, and was told that if what they suspected was right, that there was no cure for whatever was wrong with me.

The next day, at 7:15 am, I went to see an endocrinologist, they drew blood, and after several anxiety-filled minutes of waiting, It was confirmed. I had Type 1 Diabetes (T1D).

There is no cure.

I would have to take insulin for the rest of my life.

I was mostly shocked.

Not necessarily angry, but I was sad. Confused. Full of questions. But for the most part, I was okay.

Three days later, I was at the mall with my mom and sister, and we had put our shopping on hold to refuel. (Eat lunch.)

At the food court, over my chicken sandwich and the Diet Coke I was still trying to learn to love, I broke down. I’m talking crocodile tears pouring down my face. I had every emotion running through my veins at that moment and I felt completely out of control.

That’s when I decided that the best way for me to deal with this disease would be to help other people deal with this disease. I had no idea what that looked like at the time, as I still had no idea how to handle my diagnosis. But I knew I could tackle it, and I knew I wanted to use it to help others.

Fast forward and I know what that looks like now. I have spent the last year traveling and speaking to different groups with T1D around the world, helping them to navigate this disease with a positive spirit.

I use social media to share pictures and videos of my life with T1D. I share my victories, my frustrations, and try my hardest to let others with T1D know they are not alone in what they go through.

I also love to educate those without T1D about the difficulties of living with this disease. Since T1D is an invisible illness, it is easy for others to overlook the constant inner battle we fight every day.

While this disease does not define me, it is a very big part of me, and has helped shape me into the person I am today. And if I may be so frank, I really like the person I am today. The person I am today is brave, even when it’s frightening, is adventurous, even when it takes work, and is gracious, even with herself.

But it took work to get there. What has helped me the most is using my story to help others. It is so therapeutic to lay down all of my battle scars for others to see and realize that they have friends who are in the trenches with them.

The community of people I have surrounded myself with has been crucial. I love getting on twitter and conversing with my #DOC (Diabetes Online Community) friends.

It’s like walking into my own special little T1D world where everyone is willing to give you advice when you need it, or just let you vent when you don’t. It’s not weird when I say “my blood sugar got so low my tongue went numb” or “I got a unicorn today!”

My T1D community has truly been life changing for me.

I don’t want it to sound like I have it all figured out and I am completely okay. I’m not. I get burned out. I get angry. I cry so hard I start to hyperventilate.

But that is okay. I have permission to do that, and once I figured that out, it got easier for me to get through those times. It’s okay to feel those things! But it’s not a healthy spot to set up camp.

What I want, more than anything, is for people with chronic illnesses, to understand that they can do anything. Absolutely anything. And YES it might be difficult, but it is so very worth it.

This past year alone I went skydiving, ran a half-marathon, visited 24 states, and five countries including UAE, Mexico, and three countries in Africa.

“I could never do that,” is what I heard from many of my T1D friends after every new adventure. It breaks my heart every time I hear that.

YES YOU CAN! There’s a strategy for everything, and there is nothing this disease can prevent you from doing.

Find a community that lifts you up. Get rid of the negative people, words, and elements in your life. Take baby steps. Look at yourself in the mirror and tell yourself how brave you are. Tell yourself you can do anything. And if you still doubt yourself, find me, and I will tell you.

You can do anything. I believe in you.

Spotlight Story Program: Katy’s Story

Meet Katy Baker

Since before she can remember, Katy has been part of the healthcare system dealing with a congenital heart defect called Scimitar Syndrome. But what has defined her medical life has not defined Katy’s personal life.  She’s a university student, on a competitive trampoline team, and rare disease activist that’s using her voice to make a positive difference.

At 3 months old, I was diagnosed with Scimitar Syndrome, a congenital heart defect which also means I only have one functioning lung.

Since then, I have had lots of tests, consultations and been under the care of different hospitals all which I continue to go all through this today.

As I became a young adult in the hospital system, I have now moved to a different hospital, had a new consultant and had more emergency hospital visits which meant needing more tests and observations.

I first moved to a different hospital when I transitioned from pediatric to adult hospital services. I had to get used to knowing my way round a new hospital, the new tests I had to do and get to know my new doctors. And my health still correlated with my life as a young person. 

When I moved to University, this meant signing up to a new general physician surgery where they did not know what my condition was, and even experience going to the emergency room in a hospital I did not know.

From my perspective, being a child or teen in pediatric medical care means that you normally have the same hospital consultant over the period of about 16 or 17 years, or whenever you transition to adult services.

In pediatrics, you are used to the same environment and over time you feel settled, not because you’re in a hospital but because it’s somewhere you’ve got to know and somewhere you know you’re going to be cared for. Being a teen in pediatric medical care is unique because you still have the support from your family and there is no pressure when it comes to whether they are there for your appointments or not. Teenagers who are chronically ill often have to grow up more quickly to understand everything that is going on but they are still children and still need support from others.

Being a teen patient to me is different than being a child patient or an adult patient because as a teenager, you are exposed to a lot more in your life but at the same time, you are going through some other transitions which teenagers can often find difficult.

However, when you’re a child, you are often more dependent on your family and they might not be aware what is going on which in a way is an advantage because as a teenager, you often have more awareness of what you are going through and your illness which can be really difficult not only for your physical but also mental health.

Having to be in hospital as a teenager can be really difficult because of everything else you are going through at the same time in your life outside of your health. But I think that one of the most important things to do is ask for support when you need. Whether the support is a family member, a friend or someone else, having support while in hospital or with a chronic illness can often be useful.

I think teenagers in hospital would benefit from introductions and more information earlier about the transition process into adult health services. Young people often move to adult services when they are from between 14-18 years old and so new environments can seem quite overwhelming. Therefore, introductions and information about the adult services should be in place.

Dealing with my health has been really challenging, however there have also been some benefits because it has shaped me in to who I am today. I created a film last year with a charity about how my condition does not stop me from being part of my University’s trampolining team. Since then, I was in two newspapers, on a local radio station and now being given lots of opportunities to spread my story. I was even invited to speak at a Rare Disease Day event this year, which was such a great experience.

I am also really excited to participate in the Superhero Series disability adaptive sport event this August in England as part of InvisiYouth’s Charity Friends team to show that people with disabilities or illnesses can still achieve like everyone else.

Dealing with my health has taught me to not take life for granted and to take every opportunity that comes my way. 

In the future, I want to complete my Childhood and Youth degree, do a master’s degree and have a career working with children and young people in a hospital.

For me, it’s as if my life will be going full circle from my personal experiences and professional future.

Spotlight Story Program: Erin’s Story

Meet Erin Raftery

Since before Erin Raftery could even talk, she was dealing with problems in her health. From a battle with leukemia to cardiac conditions, Erin has had to adapt her lifestyle to her health, and that made Erin a stronger and more accomplished young adult than her wildest dreams.

Yes, I spent a lot of my teenage years in outpatient care at pediatric hospitals.

When I was eighteen months old, I was diagnosed with leukemia and received chemotherapy until I was three years old. The chemotherapy caused me to have several after effects. The first was diagnosed while I was still receiving chemo, and that would be Cardiomyopathy.When I was ten years old, I was diagnosed with epilepsy. When I was a sophomore in high school, my heart condition worsened and turned into a condition called Dilated Restrictive Cardiomyopathy.  Also in high school, I was diagnosed with asthma. And lastly, when I was sixteen years old, I was diagnosed with primary ovarian failure.

Continue reading Spotlight Story Program: Erin’s Story

Spotlight Story Program: Emily’s Story

Meet Emily Levy

After years of mysterious illness symptoms and suffering, Emily Levy was finally given a diagnosis of neurological Lyme disease, but that did not stop Emily for achieving her dreams.  Now as a successful boss lady and creator of the company Mighty-Well, Emily has decided to take her experience and give back to others in the invisible illness community.

My name is Emily Levy and I am the CEO and Co-Founder of Mighty Well. We create stylish and functional medical accessories.

I am a graduate from Babson College and I have severe chronic neurological Lyme disease. I first got sick in 7th grade, but because I never had a “bulls eye” rash, doctors misdiagnosed me with acute mono.

Over the next seven years, ten different doctors misdiagnosed me.

Continue reading Spotlight Story Program: Emily’s Story