Spotlight Story Program: Meet Megan Elizabeth

The power of the blog is strong, especially when it can be part of your own self-discovery and bringing community to others. That’s someone our latest Spotlight Story Program feature writer has learned through her writing and chronic illness journey, and we’re excited to share the story of Megan Elizabeth.  This British young adult dealt with a chronic illness journey many can relate to: the evolving diagnosis list. As she got older, Megan was diagnosed first with NF1, then hydrocephalus, and a couple years ago with ileocaecal Crohn’s Disease, and during that time, Megan learned not only how to adapt and find her passions, but how to build the person she would become with the constant support of her family. Megan knows the chronic illness journey isn’t always easy, but it has allowed her to learn about her resilience, strength, compassion and fun in her life, all traits that she’s adamant to advocate every young person with chronic illness discovers in themselves. With her five comforting mental reminders, Megan will give you the boost you need to recharge your life.

Hi InvisiYouth family! I’m Megan, a 23 year old digital communications officer and founder of the Hearth by Megan blog from Leicestershire, England. In my spare time, I love going on local travels with my family in our motorcaravan. I will also admit to getting emotionally invested in TV shows. Any Great British Bake Off fans out there? And like you, my life has been affected by chronic illness.

When I was 6-ish years old (it was a long time ago), I received a clinical diagnosis of Neurofibromatosis Type 1 (NF1) – a genetic condition, although my case is spontaneous as no one else in my family has it. I have freckling and café au lait marks on my body and I also have lisch nodules on the back of my eyes. I have partial NF1, meaning only half of my cells are affected and so far, I am one of the milder cases of NF. This meant I led a pretty normal childhood, albeit an annual genetics check-up.

A larger health shock happened when I was 13. I had an MRI scan after experiencing some neck pain, just to make sure that I didn’t have any internal fibromas, another symptom of NF.

There wasn’t much concern at the time, the scan was just going to be a baseline to go in my records. A few days later, we had a call saying the scan showed fluid on my brain and in a whirlwind week I was diagnosed with hydrocephalus and went within 24 hours of having brain surgery. I’m not too sure of the correct medical explanation, but my understanding is that I have a piece of skin blocking a channel in my brain which has resulted in enlarged ventricles. Despite two diagnoses, I was still well and discharged without surgery on the understanding that we would monitor things and have annual neurology reviews.

Since then, I struggled more with my mental health in my teens, particularly with health anxiety surrounding my conditions. With support, I got myself back on track and again was able to continue life pretty normally, bar the annual neurology and genetics appointments. I completed my GCSEs and A Levels at school and went off to study Linguistics at the University of Leeds.

Then another diagnosis came. One which really changed my life and introduced me to the world of chronic illness. In March 2019, I developed abdominal pain and vomiting which led to a hospital admission and concerns of appendicitis. Within about 48 hours of me being admitted to hospital, I needed a scan to show what was going on. After an emergency CT scan, it turned out my appendix was fine, but part of my bowel was inflamed. A colonoscopy and biopsies later confirmed I had ileocaecal Crohn’s Disease. Since then, I have been adjusting to chronic illness life with Crohn’s, which has been a rollercoaster of flare-ups and remission, immunosuppressant medication, and hospital trips and tests along the way.

I’ve had my own blog for many years, and this really helped after my diagnosis. I discovered an incredible group of people with chronic illnesses wanting to support one another and raise awareness. Social media can be a tricky thing to navigate when you are ill and seeing other people out and about enjoying life, but the chronic illness community truly lift each other up. Whether you are in hospital, struggling with something or celebrating someone’s successes, we are all here for each other through the highs and lows.

Since talking more about my experience, I’ve had messages from people saying that how much it has helped them. If it helps even just one other person, then it is worth doing.

I am grateful to have the most supportive family. I can talk to them about anything, and they would never treat me differently for having a chronic illness.

Sometimes though, you don’t want to have to go through the process of explaining why you feel a certain way. Talking to others with chronic illnesses, even if different from your own, can be one of the most comforting things. To know that we are in this together and there are people out there who simply ‘get it’.

We need to talk more. There is still a great deal that needs to be done to ensure equality, understanding and respect for people with disabilities and chronic illness, to ensure access to the right care, treatment, and diagnosis, to educate non-disabled people and so much more. The more awareness made; the more action taken.

Although living with Crohn’s Disease is immensely difficult, there is so much I’ve learnt along the way. In a weird way, I think I prefer who I am as a person now (minus my gut getting attacked by my own body).

I’m no medical expert, counsellor, or anything like that, but here are some things which help me get through the tough times and maybe something that could take comfort from too:

  1. The incredible chronic illness community is ready to welcome you with open arms.
  2. Going through traumatic experiences helps to put things into perspective. I’ve learnt to appreciate all the good moments, no matter how small. I never really knew what people meant before when they talked about ‘creating joy’. I now see this as actively choosing to do something that makes me feel good and having a range of options for higher and lower energy days. I’ll sometimes just put an episode of Friends on for 20 minutes, purely because I know it will make me smile and bring some light to darker days.
  3. I used to be a major planner. I had my life mapped out and used to set lots of goals. Living with Crohn’s has taught me to live in the moment more. Learning to be present has been a positive lifestyle change. It’s important to focus on the certainty of this moment, rather than the uncertainty of tomorrow.
  4. I have more empathy with others and want to help people. I am more understanding and determined to make the most of life. I want to raise awareness for all of us going through the hardships that come with chronic illness. To give everyone a voice and to create a better society where people feel safe, respected, and able to talk openly about health.
  5. Stand your ground and be honest – Don’t be afraid to advocate for yourself if you feel like someone is not listening to you properly or respecting your concerns, even if it is a medical professional. Trust your instincts if something doesn’t feel right.

It takes someone truly brave and strong to live with chronic illness. Remember how resilient, wonderfully unique, and beautiful you are both inside and out. We’ve got this!

Spotlight Story Program: Meet Kate Henry

The journey may not always be easy, but it’s your life and deserves to be lived with all the joys and passions that fuel your heart! That’s a big message from our latest Spotlight Story Program feature writer, not only in her life journey with chronic illnesses, but also in the advocacy and digital fingerprint she’s leaving on the world.  Say hello to InvisiYouth’s first New Zealander Global Brand Leader, art and design student, Kate Henry! Living with illnesses like IgA immunodeficiency, Hashimoto’s disease, POTS, and more, Kate has had many challenges for her health thrown her way since she was born. But as she’s gotten older and began finding what brings her joy, Kate began working towards being an active participant in her life, and finding happiness through adapting and excelling. With seven life mindset-boosting tips, Kate’s words will give you a deep realness on living your best life in the ways your health can allow.

*Kia Ora!

My name is Kate and I am a 19-year-old art and design student all the way from little old New Zealand, Aotearoa.

My journey with my health begins all the way back in 2002, yup that’s right… the year I was born. Although considered a perfectly healthy baby, I was apparently always unsettled. I seemed like I was in pain a lot of the time and had trouble keeping my food down, which were all just little glimpses of what my future was going to be like.

From the age of five, my health became even more disruptive to my quality of life as I began to experience chronic pain, nausea, frequent infections and viruses—many things no five-year-old should have to deal with. Over the next few years of my life I was tested on, trialed on medications and spent a lot of time with my mum sitting right beside my bed, holding my hand until I fell asleep.

At the age of seven, I was diagnosed with IgA immunodeficiency and a severe gluten intolerance. After being treated for these and removing all gluten from my diet, I found some relief, a kind of relief that every kid deserves.

But then high school happened, my body changed and unfortunately my health did too.

I was getting increasingly ill, passing out during classes, unable to eat any food without being sick, and in severe pain almost every minute of every day… all while trying to balance being a teenager. Over the next six years, I was diagnosed with Hashimoto’s disease, hypothyroidism, Fibromyalgia, Postural Orthostatic Tachycardia syndrome (POTS) and a slightly curved spine resulting in chronic back, pelvic and leg pain. Safe to say, my life got flipped upside down and everything became increasingly hard. School was hard, socialising was hard, getting out of bed was hard, being me in this body was hard. But chronic illness is hard, and my experience with it is no exception to that.

But when everything feels hard, everything also feels heavy. And with my body taking so much away from me already, lately I have been actively choosing to make my experience that tiny bit easier, choosing a much happier life no matter the circumstance. Unfortunately, that’s a lot easier said than done, when the odds are against you, but so worth it in the end. Small changes for me have made a world of difference.

Accepting that this is where I am at, that this is how much my body can do before it breaks, that this is my life and I’ve just got to work with the body I’ve been given are all thought processes that have allowed me to accept my situation. By no means does this mean that I’m smiling my way through the whole flare up, but instead of feeling guilty for not being able to do as much as others or resenting my body for the pain it puts me in, I am simply kinder to myself, which allows me to feel a bit more like me again.

Over the 19 years I’ve got to experience in this beautiful body of mine, I am so proud of how far I have come and eternally grateful for much I have managed to achieve. But the most exciting part is that this is just the start, and that there is so much more I have to look forward to, no matter the circumstance of my health. And you do too.

I completely understand that positivity is not a cure and that sometimes we want to grief our past life, our healthy life. And I think that is also an incredibly important part of the healing process, but if we can just be slightly kinder to ourselves and our situation, we might have more time to enjoy the better parts of this life we are getting to live.

So although I’m no expert and to be completely honest, I’m still figuring this whole chronic illness thing out. I’ve decided to write down some of the small tips that have helped me on this journey so far… I hope they can help you too!

  1. Look after that beautiful brain of yours. Many people with chronic illnesses also suffer from mental health conditions too. For many our physical symptoms will be with us for a while, if not forever. But by looking after our mental health we don’t have to lose who we are to our illness. We can just adapt instead.
  2. Recognise your strength—Yes you! Life with chronic illness can be so incredibly tough so you are so strong for doing life in a body that makes everything that bit harder.
  3. Reach out—there are so many amazing communities out there either online or in person that can support you. Plus making spoonie friends is always the best!
  4. Adapt—for so long I was so stuck in my ways, continuing to live my life like a healthy person, like everyone else around me. But that was extremely tiring and if anything made me even sicker. So changing the way you live to work with your body not against it can be super beneficial!
  5. Always be you. When living with chronic illness, we can come consumed by the idea of being sick that we forget who we are. Doing small activities that remind yourself of who you are before your illness and who you will be throughout can be helpful xx
  6. Find people who make you feel good <3. The better the support system, the better the experience.
  7. Allow yourself to feel—don’t be getting all guilty for being upset for where you are at or for your health, chronic illness sucks, it always will and it’s totally okay to be upset about that. But afterwards, find someone to give you a nice big hug, and remind yourself just how well you are doing.

I am so proud of you 🙂

Hugs and spoons,

Kate xx

*  “kia ora” is a way to say hello and express gratitude in New Zealand. It derives from the indigenous Māori language, te reo.

Spotlight Story Program: Meet Asia-Jorden Alexander-Smith

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

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

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

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

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

Which, of course, they did.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Who am I today?

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

Spotlight Story Program: Meet Lael Newton

We’ve all got baggage, but it’s the way we carry it, personalize it, and allow others to support us with it truly defines who we are as people. This is something that not only runs deeply into InvisiYouth’s programs, but also within the mantra of our new guest writer for this month’s Spotlight Story Program feature, Lael Newton.  A 19-year-old Australian, Lael was thrown into the chronic illness journey in her early teen years as she began having seizures, now diagnosed with Functional Seizures and Functional Neurological Disorder. While trying to balance all that was part of her life prior to her chronic illness to her life now, Lael has learned ways to adapt and excel. A big portion of that is using her health journey to connect, motivate and support others through her social media platform. InvisiYouth often says that YOU are the best teachers to give ideas and encouragement to others because chronic illness isn’t ‘one size fits all’ and Lael brings that forward with such confidence. Her advice for fellow chronic illness warriors, and our non-disabled allies is incredible and will fuel your hearts, we promise!

Hello beautiful people. How are you? I hope you are well in whatever season you are going through. If we haven’t met, I’m Lael, I’m 19, and I’m chronically ill.

I’ve been living this life I didn’t choose for nearly four years and it’s been one hell of a journey.

I was diagnosed with Functional Seizures when I was 16. To put it very simply, I don’t have epilepsy, but it looks like I do. I have seizures in the same way, but my brain is fine. Put my brain scans next to a healthy one, and they’re practically identical.

Functional Seizures fall under Functional Neurological Disorders (FND), where my brain works the way it should, but does some things wrong. For me, it’s how my brain processes stress.

While a normal brain would trigger the fight/flight response, my brain triggers a seizure to protect itself. My seizures are triggered by stress, both big and small. A small disagreement with someone, a major exam, and anything in-between, was enough to put me on the floor.

There is no cure, only management.

My life was flipped upside down in an instant. One second I’m playing rugby in my sports class, the next I’m on the ground. I haven’t been the same since.

I was having seizures once or twice every day for months. I dropped a quarter of my weight. I lost a lot of my hair. I lost most of me. I was falling asleep in class, and falling behind in everything. I couldn’t keep up with the pace of life I was used to. Everything was falling apart.

Everything that I loved was going away and I couldn’t stop it. It was terrifying.

I like to be control, but in an instant, the monster in my head was starting to take the wheel, and I’ve never felt more scared in my life.

This obviously didn’t help, because fear is stress, and stress ain’t great for me, creating a vicious cycle of unconsciousness.

My days are a weird mix of busy and quiet. Fitting in as much as I can into the short period of time where I can function, before I crash and need to lie down in silence so I can recover from the smallest of tasks.

I struggle with my memory, and will experience memory lapses often. I lose focus easily, and find it hard to concentrate. I will have days where I’ll be sitting in a room full of thick cloud making my thoughts hazy and difficult to understand.

I find that I can’t be in a room full of people without feeling uncomfortable, due to the crazy amount of overstimulation, which has always been one of my main triggers.

I struggle to go to big events with lots of people, lights and sound, simply because my brain can’t handle it. I’m constantly tired in every possible way. I will often need to take days off, just to regain some strength to keep going through the week.

Now, I’m so very blessed to say that I’ve been seizure free for almost a year. I’ve seen so many doctors who have helped me along the way, but it has not been an easy ride.

I still struggle with the same symptoms, probably now more than ever, but I’d rather deal with them than have a seizure every day.

I often get asked whether I would go back and change the way things went. Whether I would rather live a life without my condition. Without the tests and the needles and the hospital trips. And to be completely honest with you, I don’t think I would.

Do I wish I didn’t have to put up with all of this?

Yes.

Would I completely erase the journey?

No.

I’m a firm believer that everything happens for a reason. I wasn’t given this baggage to just stumble through life. I was given this to help those around me carrying the same thing. Offer a new way to hold it, a new way to drag it along, a new way to move around with it.

No one wants to go through this. No one thinks this chronic illness journey is a glamorous one. But if it helps one person, I’d do it all over again. No one deserves it. No one should walk this road alone. I would do it over and over again to help even one person feel less alone.

So, my chronically ill friends, I’m so sorry. I’m sorry that you have to walk this journey. I’m sorry that you have to deal with all the things that comes with this. I’m sorry that have to stumble through the day while putting on a happy face. I’m sorry that the words “but you don’t look sick” are thrown at you.

Please know, that you are strong. Really.

The strongest people are the ones that are at war with their body. I urge you to keep fighting. It gets better, it gets easier, you learn, and you grow.

You aren’t selfish for saying no to things. You aren’t a horrible friend for not responding to their messages or ignoring their calls. You aren’t lazy for struggling to leave the house. You aren’t a burden for the things you go through.

You are doing your best to survive, and that’s ok.

To my able-bodied friends, please remember that we are trying to fight a battle you don’t see. Please know that when we don’t text back, it doesn’t come from a bad place, it comes out of a place of self-preservation, where we’ve hit our limit and life is just too hard.

I hope that these few moments we’ve had together have left you with something. You’ve made my journey worth it.

I’m always around for a chat. If you have questions, ask. If you need a friend, let’s talk. I know this journey can feel incredibly lonely, so don’t be afraid to reach out to someone who can understand. Send me a message on Instagram @laelgracexx (I might take a while to respond, please forgive me, just trying to survive), I can’t wait to hear your story and share what I’ve learnt. You’re doing amazing!

~Lael x

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 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: 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.”