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 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 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!

Illness Isn’t A Crutch: Why It’s So Hard For Health People To Learn Illness Isn’t An Excuse

April 28, 2017

“Why are you bailing again last minute?”

“Are you sure you’re gonna come, or are you gonna flake last minute?”

“What’s up? You’ve been MIA for days?”

If you ask any teen or young adult with chronic illness, they can probably share hundreds or more quotes like this. Hundreds of times when they have had to put their health first and change or cancel plans with friends or family. Countless times when they’re suddenly dropped out of a group text, or given the generic “I’m busy” response without warning or a true explanation.

But what I’ve learned from my own health struggles, and I’ve learned from our youth supporters, is the guilt, stress, and anxiety that comes from the feeling your peers equate your illness as making excuses. We can wait anxiously to see if our friends understand why we may “disappear” or believe it’s just another excuse.

What we need to address here is the basic fact for our healthy circle of friends: illness is not a crutch (metaphorically speaking, because sometimes it’s needed literally) and it is not used as an excuse.   

Does that friend of yours with an illness want to cancel on plans? Not really!

Does that youth desire to be so misunderstood when it’s simply their health? Absolutely not!

So the true goal here is to lay out the truth. To give the basics of really understanding that illness is not a “hall pass” to get out of events or be distant, illness is simply that…illness. It is confusing, and unpredictable, and can take over life in the blink of an eye.  And we need to empower the youth with chronic illness to be confident in the fact that they might not always do the “popular” thing, but they are always doing what’s right. Yet again, sometimes what makes the most sense, is often forgotten in our daily practices, so we need a bit of a reminder.

Reminder #1: Most chronic illnesses don’t have a schedule

While PT sessions, doctor’s appointments, and medication treatments all fall into a schedule, the nitty gritty of having an illness each day definitely does not. You cannot plan when you’ll have a flare-up, side effect or an episode…it just happens.  It’s the main explanation for why many of your friends living with chronic illness have to bail out last minute.  I remember times when I was getting ready to hang out with friends and suddenly my RSD symptoms would spike, and I had no energy to move without excruciating pain, so I would cancel last minute.  It was a sudden change in my plans because of the sudden change in my health.

These moments when illness and injury take over are never planned, they are spontaneous, and in reality, it is not what any young person wants to happen in that moment, or ever!  Youth still want to be teenagers, and young adults, hanging out with friends, going out, and living life to that ‘normal social standard.’ But when you add illness into the mix, you have to become comfortable with the notion that your schedule is often dictated by your illness, not your desire.  And that’s not only a reality that our spoonies need to understand, but there friends and family as well.  Our inner circle, need to be aware of this fact. This allows them to gain an insight into our world and to better understand that when you don’t show up, your illness is a valid reason, and never an excuse. There is no way to say “your using your illness as an excuse” because newsflash, if you have to bail out on friends because you’re not feeling well, that’s as valid of a reason as you can have.

Quick Tip: Come up with your own weekly calendar and map out your PT, your medications, your doctor visits. This way, you can see when your body might be too exhausted, or your certain treatments might take too long/have side effects, and that allows you to plan ahead with friends.  Now, this isn’t fool proof, we cannot see the future, but it give you that ‘educated guess’ on whether or not you’ll genuinely be able to get out with your friends.

Reminder #2: It’s just as annoying to spoonies to have to pull the “health card” as it is to hear it

What people need to understand is frustration is felt on both sides of what I call “pulling the health card.” Yes, I can understand where friends come from when they get annoyed that you might keep bailing out, or you completely ghost temporarily.  It is frustrating that you make plans and suddenly a friend keeps pulling out, saying something happened or you’re not feeling well.  You begin to assume that your friend just doesn’t want to hang out with you and wonder if every time they say it’s a health problem, if that’s true for each case. And the only reason I know this is because when I was a teen living with RSD in its prime, I didn’t have any friends that dealt with illness. A party of one in the spoonie community! I was forced to be around all healthy youth and find my way to get this community to not just adapt to my new normal, but to better understand why I felt their ignorance to my illness.

But what many healthy friends do not understand is that the frustration is equally felt on your spoonie friends, even more so to be completely honest.  It is annoying to be stuck in a body or mind that does not function at 100% all the time and hinders you from doing everything you want. It is agonizing to know that when your illness completely builds into a ‘bad day’ you need to change your plans in order get through the hours you have left. Most teens and young adults with chronic illnesses do not want cancel plans, they don’t want this to change, but they need to do what is best for your health. This is not a one-sided annoyance, because really think about it: would you want to be getting ready to go out, and suddenly your illness symptoms spike, or you’re exhausted with fatigue, or you have bad reaction to medications/treatments…and then you have to send that text that you’re not able to hang any longer?  The main answer is absolutely not! If you put the shoe on the other foot, your friends will realize that you need the blatant understanding, because it’s frustrating to all involved.

Quick Tip: Try to be the host of your friend hangouts.  It’s a simple fix, really because this lets you be in complete control.  You get to choose the activities and your extremely comfy clothes. You would be able to have every one of your medical needs at the ready for you, whether it’s IV treatments, medications, heating pads, ice packs, bandages and wraps and more.  With friends that would want to learn more about your illness, or want to be as open or understanding as possible, they would be able to adapt your hangouts to your needs.

Reminder #3: Sometimes generic replies are easier than explaining the reality, so accept them

Let’s be real, many teen spoonies don’t really want to share all the little details of their illness with their friends. And especially if they feel self-conscious about their illness and the way their friends perceive it, they will not want to give up the true details.  If you feel your friends are going to judge the truth of your illness, or think you’re making up an excuse, you begin to hide their realities of your illness.  Why share and be judged, when you can just deal with the backlash of bailing or going MIA? I’ve had youth tell us that they would even send photos of themselves to their friends just as proof that their illness has changed their plans…and that should not be the case! No youth should feel they need to justify their illness and prove their reasoning for canceling plans!

That is why so many times, youth with chronic illness decide to just send these generic, nonspecific replies when they need to cancel plans.  It can be so much easier to just say “something came up” one time, than say “family plans last minute” another time, and then finally explaining the real medical reasons on other occasions.  The nonspecific texts are not meant to be rude or not descriptive, but rather a way to protect a very personal health struggle. And it does help to truly avoid that inner feeling that youth with illness can feel about some of their friends believing their illness is being used as an excuse.

So…at the end of all of this, what’s the takeaway?  What’s the moral of this story? Friends and family: remember that we cannot control when our health takes a front seat in our day. When we sometimes back out, or disappear with our generic explanations, it’s because we really don’t want to pull out the health card or have to explain every detail.  And spoonies: remember to be honest with what you need, and know that sometimes, while it’s not always what we want, you have to do what’s best for your health.  You need to find that inner confidence in understanding that there will be moments when friends will feel like outsiders in your life, just like you may feel external to your social life.  And this is okay!  It’s all about being confident in the ride of your social life, in the peaks and falls of participation as I like to call it.

The moral of this story: ILLNESS IS NOT EQUIVALENT TO AN EXCUSE, IT’S A REASON FOR ACTIONS, AND THIS STEREOTYPE NEEDS TO CHANGE.

It’s alright to be the completely involved friend, and sometimes drop the ball…the point is that your friends and family support your health journey unconditionally and allow you to pick up that ball whenever you’re ready.

~Dominique

New Year, Same Health and Same Work: Finding the Always-Changing Balance of a Work Life and Illness Life

February 8, 2017

As everyone seems to be trying to stay true to their New Year Resolutions, some were daring and used a pen, others are like me and preferred to make sure their new hopes and goals could change with the ease of an eraser. Recently, I’ve been hearing from a lot of you wanting to know about the tips and tricks I’ve learned over my spoonie years to get off on the right foot in 2017 and balance my two competing lives: my work life and my illness life. And especially since my latest flare-up of a RSD episode after my injury a few months ago, I’ve had to delve back into this balancing act a lot more. I’m like every one of our youth, working hard to find the ways I can still work while not hurting myself. As I tell each medical group I speak to: “Find the ways to compromise the treatment plans without compromising your patient’s health.”

Continue reading New Year, Same Health and Same Work: Finding the Always-Changing Balance of a Work Life and Illness Life