Spotlight Story Program: Sophie Ward’s Story

Meet Sophie Ward

When life brought health challenges into British 24 year old Sophie Ward’s life, ending her dreams of trying out for the 2012 London Olympics, she used her fighter athlete spirit to get to the bottom of her struggles. After a diagnosis of Lyme Disease, Sophie not only focused to improve her health, but worked around the UK with Parliament, on radio/television, and with her blog to bring awareness to Lyme Disease education and prevention. She’s a kind and passionate young women, inspiring others to find their inner empowerment. And as an InvisiYouth Global Brand Leader, Sophie uses her advocacy and philanthropic skills to bring positive change to our international older youth crowd. 

In August 2008, my family and I travelled to Beijing to watch the Olympics. Many of my friends were competing in the swimming events and my dream was to reach London 2012, so it was a perfect opportunity to soak up the atmosphere, support my friends and learn what to expect. Once the Olympics were over we decided after traveling all that way it would be silly not to sight see. So, we did! We were lucky enough to go to the Panda sanctuary and it was AMAZING.

Here is where my nightmare started. I began with a fever after seeing the pandas. I was treated at the time with 48 hours of antibiotics which seemed to do the trick.

On returning home, I was forced to give up my swimming career due to nerve damage after an umbilical hernia operation. I felt lost. The years went on and my health declined; weight loss was the result was increasing food intolerances, migraines, joint pain, muscle weakness, blurred vision, confusion, muscle pain, fatigue, insomnia, temperature sensitivities, itchy skin, rash, nausea and so on. There seemed to be a new symptom every week. I saw doctor, after doctor, after doctor. All of them passed me on to the next or called me crazy.

I was losing the will to keep fighting. Was I crazy? Was it me? My family questioned my health too. Sometimes asking me directly if I was the cause of my health issues and to ‘snap out of it.’ How could I ‘snap out’ of something I zero control over.

2017 began and after going to the hospital for food intolerance tests, the consultant suggested I  see someone who specializes in CFS (Chronic Fatigue Syndrome) as at lot of my symptoms matched. The consultant gave nothing away at the time. He just told me to do some blood samples so I did, and returned a month later for the results. We were shocked. I looked at my Mum confused, she grabbed my hand.

I knew for so long I’d been struggling but I still coped. Feeling a bit off didn’t mean I would lay in bed all day. My professor read my results out to me. That stated I had very active Lyme levels and Coxsackie virus. Along with Epstein Barr virus and Herpes 1,2 and 6. At first, we thought FABULOUS a diagnosis… how do we cure it?

Then Lyme disease and the other viruses were explained to us. This fight would be for life, a life-long struggle. The fight would become my life.

I returned to my GP (general physician) with the results and they told me I was crazy, I had an eating disorder because my weight was so low, and I would have to suffer with a ‘chronic disease’ for it to stay so low. They told me my results were false because they had been carried out above and tried to section me. The consultant however, couldn’t find any grounds on which to section me. I was perfectly sane.

I did try inpatient help on my own accord for my eating. It was an utter disaster! I lost 5.5lbs in just 6 days! They starved me on a liquid, low calorie diet and then bombarded me with everything I was intolerant too. I was so sick and hungry. I was forced to discharge myself. This proved to my GP it wasn’t me, it wasn’t my fault and I was perfectly sane. This battle will be is endless and there is no rest.

My health journey has made me PASSIONATE about helping others who are going through similar situations, trying to raise awareness about Lyme disease to prevent people from going through this hell.  A cure, even though we fight for one everyday is a long way of yet. Prevention is key to save future generations and loved ones from the disease at this point.

I am part of the Lyme Discussion UK Administration team and work closely with my local MP (Member of Parliament) to raise awareness on Lyme Disease. I hope my journey and story inspires many who suffer with a variety of chronic illnesses and that we never feel ALONE OR INVISIBLE as our illnesses can often make us.

I strongly believe knowledge is power, so I continue to learn and gain knowledge through meeting people, talking, listening and reading.

People are the best form of lessons and knowledge. Listening is SO important, people relate, people feel less alone and less alien. We pick up hints and tips, look down different paths and doors open.

My work with the Lyme Discussion Group has helped me understand the political fight we face, meet likeminded-people, gain advice, knowledge and FRIENDS. In my work, I have offered support to people who no longer want to keep fighting. My family has fought to have signs and poster placed around Residential and holiday parks across the country and I have my local MP fighting and pushing Government for better tests, treatment methods, research and awareness information.

I am also a Global Brand Leader also work with InvisiYouth Charity!

I hope to make friends, gain further knowledge and help people like myself who often feel LOST, worthless and crazy. I hope to inspire people to find a purpose when there doesn’t seem to be one and celebrate all the victories and pleasures in life to boost our moods and keep us fighting.

And my blog, Sophantastic, has been my own personal journal. A journal to store my research, new knowledge, treatment stories, personal struggles and medical issues with the world in hope that others can relate, and we can find comfort in not feeling alone in our struggles.

I won’t let the world change me, I must change the world. And I must change the world to become more accepting.

So many of us have battled years with feeling like we are ‘alien’ and don’t belong. Just because we are poorly it doesn’t mean we can’t reach our dreams, we can’t make a difference and we are crazy. Our dreams and goals may have to be altered but the constant ignorance and dismissal in the health industry for people with chronic illnesses and chronic disease is not acceptable or healthy.

Society needs to learn to not see our weaknesses in a negative light but as stepping stones to learn and gain strength from. To add power to our strengths. This simple change would help improve lives because everyone knows a strong mind is the best weapon.

My life with Lyme Disease has inspired me to become the stronger person I am today. I have felt pain beyond my limits and become grateful for every moment.

It has taught me that nothing can hold us back, only WE hold us back. We have the power to change the world, empower and inspire people all around the world.

Spotlight Story Program: Shona Cobb’s Story

Meet Shona Cobb

Breaking the stigma-ceiling for chronic illness and disability comes to second nature to British 20 year old, Shona Cobb. She’s used her experience of life with Marfan Syndrome to empower others living with disabilities and illnesses, and change the way businesses, media and society treat disability. Shona uses her successful blog and speaking on TV and radio around England to bring change to disability rights, and as an InvisiYouth Global Brand Leader, Shona’s advocacy can reach an international stage. 

‘Is there a cure?’ is a response I get time and time again when explaining my rare condition to everyone from friends to strangers in the street. Perhaps if I were diagnosed as a teenager, or even an adult, the realization that there is no cure for my condition would have been a difficult one but knowing all my life that I have a genetic condition has given me a long time to come to terms with my prognosis.

Marfan Syndrome is the name of my primary condition, the starting point for all my secondary conditions. It’s a genetic connective tissue disorder, with my Mum having passed it on to me, and it can be visible quite far back in our family tree, with 2 family members dying from associated complications during my lifetime. A daunting aspect of this multi-systemic condition.

Long limbs are one sign of the condition and my unusually long arms and legs were visible on ultrasound scans while my Mum was still pregnant with me. Officially I was diagnosed as a toddler, when I started to meet more of the criteria, but my Mum knew that I had inherited Marfan a while before that.

For most of my childhood I was a happy, energetic child. I had hypermobile joints that I would show off to my classmates and I got ‘growing pains’ a lot more than my peers. Unpleasant but not unmanageable. It was as a teenager that more serious problems started appearing. I found myself missing more and more classes to attend hospital appointments, and the reality of my condition started to sink in. It wasn’t just something I happened to have anymore, it was affecting my daily life.

I was diagnosed with Scoliosis, a curve in my spine, at 13 years old and by 15 I was unable to climb the stairs at school, finding myself doing worksheets in the library instead of joining my classmates on the top floor of the main building.

It was isolating and really affected me because I loved education and learning, I thrived at school and worked hard. So, when I was booked in to have surgery to correct the curve with titanium rods and screws I was over the moon at the prospect of some relief from the back pain. I blogged about my experience, with my Mum keeping a diary of my first week in hospital, which proved to be a good idea as I barely remember that week. I even documented my experience with a complication post-surgery and finding out that I would need a second surgery. That was the beginning of me using my experiences to educate and support others, and it was also the start of my body beginning to crumble.

By 18 I’d had one hip replaced and the other being on its way to needing the same, a difficult thing to get your head round when joint replacements are so often associated with elderly people. I really thought that after my spinal surgery, I would return to life as normal. Then after my hip replacement, I was sure that was it, I’d surely endured enough. It was downhill from there though and now, at 20 years old, I’m a powerchair user with a large cyst at the bottom of my spine being my current issue.

It’s incredible how humans adapt, after every surgery I believed it was over, I believed I could not cope with anymore but again and again I proved myself wrong. Resilient, that ‘s what people would call me. I believe though that we all deal with the hand life gives us in whatever way we can, everyone has struggles and mine happen to be health related. Others deal with grief, violence, homelessness, the list goes on. I was determined to take the hand I’d been dealt and make the best of it.

It would take me all day to list everything I’ve been involved with in the past 2 years. I’ve used my blog and social media to raise awareness of Marfan Syndrome and educate people on disability issues. I’ve talked about how environmental movements can affect and exclude disabled people on the news. I’ve been involved with a national newspaper’s project to document the daily access problems I come across as a powerchair user. For someone who was painfully shy as a child, I’ve certainly come out of my shell, and that is all down to me having a chronic illness and being disabled. I feel I’ve found my calling in life. I’m not currently able to work but I can use my free time and my voice to help raise awareness and make real change.

I’ve helped local shops install ramps to improve access for disabled people and I’ve worked with organisations to improve their inclusivity. Charity work is something I’ve passionate about though, being the Marfan ambassador for The Hypermobility Syndromes Association (HMSA) and being the youngest person in a British Heart Foundation (BHF) patient advisory group. I’ve taken what life has given and done my best with it.

People often speak about disability and chronic illness as though it’s the worst thing, but I feel empowered by disability. I am proud to be a young disabled woman, I am proud of the change I’ve made and am trying to make in this world. Being disabled and chronically ill is a huge part of my identity, why shouldn’t I be proud of that?

I hope to inspire other disabled and chronically ill people to be empowered by their conditions too, as many other disabled activists and campaigners have done for me. I scroll through my Instagram feed and I feel empowered to see so many disabled people not being ashamed of their disability and embracing their bodies.

I’ve still many rocky roads ahead of me, including major open-heart surgery and potentially more risky spinal surgery, but I still look forward, looking back at the past, at a life that could have been, has never done me any favours. I’m looking forward now, looking forward to the change I can make in the world, looking forward to being more confident and looking forward to a time where disabled and chronically ill people can feel empowered by their disability without others telling us we shouldn’t.

I’m excited to fulfill these goals and support others, especially in my new role as a Global Brand Leader for InvisiYouth!

 

Spotlight Story Program: Rachel Mayo’s Story

Meet Rachel Mayo

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

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

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

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

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

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

There is no cure.

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

I was mostly shocked.

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

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

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

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

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

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

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

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

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

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

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

My T1D community has truly been life changing for me.

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

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

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

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

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

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

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

You can do anything. I believe in you.

The Invisible Illness Chronicles: It Can Be Exhausting to Feel Like You Need To Act Healthy When You Don’t Feel Healthy

October 17th 2017

I constantly get questions about the hacks to living with chronic illness (I mean, that’s what InvisiYouth Charity’s mission in life is all about). Those questions double when it comes to life with an invisible illness. It only seemed appropriate that with part of my monthly blog I would wrote some blogs on topics surrounding invisible illness.

At InvisiYouth, we constantly promote the vitally-needed change of inclusivity on all chronic illnesses. To treat physical health and mental health exactly the same. To show equal support and aid regardless of visibility. To note that invisible illnesses are note just of the mind, but also of the body too.  So…to honor if you will, the fact that I live with one foot in both the visible and invisible physical health struggles, I’ll be occasionally posting articles on the unseen struggles. These are appropriately titled “The Invisible Illness Chronicles.”

The biggest struggles living with invisible illness (besides the actual illness itself, of course) is how you can look so healthy and feel so horrible. It can be like you’re living in a sound proof booth without the mic on, everyone can see you, but no one can hear what’s going on. For myself, it’s this weird concept of dealing with all these medical symptoms affecting my nervous system, muscles and vascular system but no one can truly see the damage it takes on my body at all times.

So when my life has to involve the outside world, specially those not in my close inner circle, I feel like I have to put up the mask, to adapt and get through my schedule for the day. I go into business meetings, and conference calls with potential advertisers and Skype calls with older youth health advocates and subconsciously, I put up a front as the “healthy nonprofit owner” because that’s what I know what I look like.  Sometimes I’m driving to meetings with slippers and sunglasses, isotoner braces on my ankle, hand and knee, but the second I park my car, I have to take all that off, strap on heels, and put on the boss lady smile to power through meetings.

Now I say “I have to” like it’s an obligation, but this is a decision I make out of societal structure if I’m honest.  I look completely healthy on some days, but anatomically, my RSD and connective tissue does not reflect that at all.  I am living with a chronic illness that I have to adapt my entire way of life around it, but the people who do not know me would not know that because I’ve had nine years to master a “new normal” way at life.

Truly, it is exhausting to act like I am healthy, to walk, sit, talk, and be the healthy person my physical body makes everyone think I am.  But also, it is equally exhausting to have to explain to every single new person that I meet what my medical situation truly is, to tell them about my chronic illness.  So I have make a decision: should I be exhausted by having to try to explain my health to people who I’m just meeting, or be exhausted by acting as healthy as I look?

I choose the later.

When you are living with an invisible illness, it can be really hard to be given any true empathy because no one can gage your medical situation by looking at you.  No one that is not a family member, sibling, caregiver, boyfriend/girlfriend, or friend knows about the health struggles you live with on a minute by minute basis, so they honesty think everything is completely fine with you.  It becomes and ‘all on you’ situation because the world will not automatically feel for your chronic illness because it cannot see it.

You need to dig deep in yourself, find strength and sympathy in yourself for your own journey with your illness.  Find comfort in those around the world that are also living with your invisible illness that can relate to your truth.

It’s a two-fold community you need:  get your supporters who can build you up like family and friends that are by your side because they love you, and get others in your life living the same journey of invisible illness that relate to you.

That is why I make the conscious decision to put on the mask when I need to be the healthy nonprofit owner that my physical body says I am on some days, to walk into meetings with sponsors or fellow charity owners and I will meet with them for hours of work, getting back into the office completely exhausted and dealing with symptoms and side effects for hours of recovery.

I repeat, it is so beyond exhausting to act as healthy as I look from both a medical standpoint and mental standpoint because my entire body physically will hurt from the trauma I put onto it to “act healthy” while I also put myself under stress from people just not relating to the situations I am going through.

But there is a bright side to all of this.  When I get back to my office, I’m on a mental rush of all the good things that will come from the work that I’m doing, from the philanthropic work I do each day for the young people I get to help.

Also, I sometimes feel like I have to act as healthy as I look when I give speeches to teens, or meet up with old friends.  And the funniest thing is that for those hours, none of them will ever know about my health…that is until I reveal that I am living with an invisible illness!  It is absolutely amazing when I pull up my photos of the physical symptoms of living with a neurovascular condition and the physical symptoms that sometimes to plague my body that sway the pendulum over to the visible illness category.

It is amazing to see the way people treat me completely changes once they can actually see my illness. And that’s so wrong if I’m honest! There is just an entire new level of recognition on these high schoolers’ faces when these young people can finally see that I am someone that lives with a chronic illness but also lives a completely fulfilled life…I just live it on my own terms the way my body allows, regardless of what society says is “normal.”

There are so many days I wish I could yell out to the world, take some sort of magic wand and immediately change how society looks at those it deems ‘different’ in one swoop.  That invisible illnesses are not something to fear or be confused by, but something to learn from and give empathy to like everything else in life.  No one should feel obligated to hide their health, it should just be an automatically understood element to someone’s lifestyle.

Everyone is unique, and if we celebrated uniqueness, then we shouldn’t have a problem embracing that when we meet people, because we would constantly be learning.

I always say that living with an invisible illness is like a game of “Where’s Waldo?” The problem is that none of these people were told to were the signature red-and-white striped shirts and black glasses so no one can find them among the crowds throughout the world.  It is our job as a society to become vocal and talk so we’re found, and to change the stigmas surrounding invisible illnesses of all kinds.

~Dominique

Spotlight Story Program: Louise’s Story

Meet Louise Cooper

We’ve gotten to know Louise first as one of the cool British health and lifestyle bloggers that followed InvisiYouth, but we are getting to know her even better as a member of the InvisiYouth team for this winter’s Superhero Series Winter Games this December!  She’s an Ehlers Danlos Syndrome warrior that’s found ways to balance her love of sport and travel with her illnesses, and her open honestly makes her one to watch in our book.

My name is Louise, I’m originally from Essex, England. I was diagnosed with Ehlers Danlos Syndrome, PoTS, Chiari and a whole host of other conditions in 2015 and am still under investigation for a variety of things!

I have always been a “sporty” person, I didn’t find out about my EDS (a connective tissue disorder that can affect the skin, joints, muscles and vascular system with hyper-mobility and hyperelasticity) until three years ago when I was 25, but have been in and out of hospital my whole life and had a back brace for scoliosis at the age of 12 for a few years. The only time I didn’t have to wear my back brace was when I was exercising, so, if there was a sport – I did it! I was also a competitive swimmer throughout my teens, I even made it to nationals (albeit in a relay team by HEY, it still counts!). Unfortunately, after various immune issues and bouts of glandular fever and CMV my exercise started to tail off in my late teens and early 20s.

I held down a full-time job for 5 years, bought my own apartment and car, I had everything I needed! Things came to a head around 18 months ago and my body just said ENOUGH, I was working ridiculous hours at a job in London with the commute, and not looking after myself much. The average person would burn out, let alone someone with a chronic illness, but I guess that’s just the fight in me.

So I started back with physio, some days I’m fine, some days I’m not! I like someone who gives me physio exercises based around the gym – I just respond better that way, I like to be challenged and push myself further however it is SO important to do this correctly and under supervision. Physio will always be a part of my life as I will always have ups and downs in my health but I dont see this as a negative, I learn each time what I can do to strengthen or protect my body in order to prevent or minimize thedisruptionto my body for the next time.

I have found it’s important to use supports, straps and anything else for your physio exercises and gym routines. This will always give you the confidence to know you are safe while exercising! I currently wear, finger, x 2 wrist, knee and back supports when working out. While there’s not an awful lot I can do about my ligaments and tendons, I can strengthen and tone the muscles around my body to get them performing as best as possible! Being back in the gym the last two years hasn’t always been easy. I’ve a fair share of blips along the way with disc tears, bulges and tarlov cysts now appearing, but this has only made me more determined to keep going! Keeping mobile and active reduces my pain, but there is a very careful balance, I have to make sure I dont overdo it and listen to my body!

I also have to make sure that I listen to my health not just through exercise, but through my diet and medications as well.

By health, I mean nutrition, taking my tablets and everything in between. I’ve always had food intolerances, but recently these have become a lot worse. I don’t believe in cutting out EVERYTHING from your diet, it’s everything in moderation and finding out what works for you.

My motto is – listen to yourself. I find my body tells me what I need but generally, I’ll eat meat, fresh veg and a small portion of carbs. Its about trial and error and finding what works for you, and you really, really do have to persevere, it won’t change in a week, it has to be a lifestyle change in order for it to work.

Possibly most importantly – Take your medication!! They are prescribed for a reason – and I know this can be hard, I am forgetful, this is something I’ve really had to work on! It sounds SO easy and its not that I don’t want to take them it just becomes – I’ll do it in a minute! How do I manage it now? I leave my tablets in my room and kitchen, if there staring at me, I can’t avoid them!

When living with chronic illness, it not only can take a toll on your physical health but also your mental health. My mental health impacts on my ability to participate in my exercise plans and my dietary programs. If I am feeling pessimistic (which we are all entitled to at times) or having a bad day, I am less likely to want to go to the gym or look after myself as well or cook my dinner.

Now this isn’t necessarily a bad thing, nobody in the world is 100% positive all day everyday, but for the most part, I think it is important to have a Positive Mental Attitude (PMA). Even on my bad days, I always try and find a positive. For this reason, I usually have flowers around the house – if I can’t think of anything else nice about my day or if I’m feeling low, I can always look at flowers to give me a “pick me up.”  Negative thoughts cannot change what has happened or the current situation you may be in or what your future may hold. But, what can change it? Trying.

Trying everything, and anything thrown your way.

I moved/travelled to New Zealand, started promotional modeling, made a great group of friends, went on adventures, hiked 4 hours in a bush, appeared on TV (albeit an extra!), my health was the best it had ever been! I’ve recently started a forum along with some Chronic Illness friends and we will be uploading beginners home workouts and basic physio (all are qualified, I will just be performing the routines).

But one day I woke up unable to move and spent the next 2-3 weeks in and out of hospital and have since, pack up my room and sold my furniture in New Zealand and returned to Essex to give my best chance of recover and further testing on what we believe may be neurological.

One thing that I’ve always found incredibly hard – and still do – is I look totally “normal”. I don’t have a cast on my leg or have visible scars so I often hear the phrase “but you don’t look sick”. I’m quite open about my health and try and raise as much awareness as possible, by posting “normal” pictures and trying to change the way illnesses are perceived – just because you can’t see it, doesn’t mean it’s not there!

Am I nervous, anxious and scared? Of course! But I’ll keep trying and determined to keep going, if I’ve learnt anything its that were a lot stronger than we realize and give ourselves credit for.

That is why I’m so appreciative of being asked by InvisiYouth to be a part of their Charity Team for this past Superhero Series Triathlon for disability adaptive sports.  And while I couldn’t compete that day, I am thrilled to be part of the new InvisiYouth Charity Team for the upcoming Superhero Series Event this December, Superhero Winter Games. The work they do is very close to my heart and something I’m so passionate about – I wish I would have had this connection to the community in my teens – before the days of social media!! I cannot wait to support InvisiYouth in the Superhero Winter Games run and hopefully raise a bit of awareness too!

Spotlight Story Program: Shira’s Story

Meet Shira Strongin

There is no joke around the statement that 18 year old Shira Strongin is an OG Sick Chick…in fact, she took her personal experiences growing up with chronic illnesses and built an entire international community surrounding the exact name, The Sick Chicks, all about empowering young women living with illness and disability.  When she’s not motivating others, Shira is motivating those law makers on Capital Hill in Washington DC, fighting hard to make changes that will positively impact the lives of so many youth with chronic illness in the USA.  And now she’ll be going to university in the country’s capital, so female illness empowerment is about to get a lot louder!  

“There’s no treatment. I’m sorry.”

Words no one wants to hear, but especially no child or teenager. But it’s the reality of living with many complex, life-threatening diseases. Growing up I knew I was sick, there was something off that doctors continued to miss, but it wasn’t until a spine injury that was a trigger event, that we realized how sick I was. It turns out I have a vascular subtype of Ehlers Danlos Syndrome and other rare comorbidities.

Instead of being in school or doing “typical teenage things” I’ve spent my adolescence in and out of the hospital fighting for my life. I soon realized how absolutely uncontrollable my health was, and decided to turn to advocacy as a way to take back control. I might not be able to change my immediate situation, but I sure as hell would make sure I impacted others’ situations and impacted future health care.

(*InvisiYouth Editing Note: This post was written in August while the fight for Cures Now was happening, a piece of legislation that has now been passed. And yet even currently so much is currently being discussed about healthcare in the United States, so keep on reading why Shira knows healthcare advocacy needs a youth voice!*)

Currently there is important legislation that is a revolution in healthcare that could completely change how complex, rare, and life threatening diseases are treated.

Instead of having to hear the phrase, “There’s no treatment. I’m sorry.” We could have access to previously off-label medication.

There will be research being done.

There is hope for us all, and because this is our future, we must take a stand.

“Congress is working together on a nonpartisan issue that will have a profound effect on the lives of all Americans. H.R. 6, the 21st Century Cures Act, will bring our health care innovation infrastructure into the 21st Century, delivering hope for patients and loved ones and providing necessary resources to researchers to continue their efforts to uncover the next generation of cures and treatments.” – Mission Statement, House Committee of Energy Commerce, 21st Century Cures

Is it just me or do you get chills reading that paragraph?

Finding advocacy allowed me take control of an uncontrollable situation (my health.) Now, one of the pieces of legislation I’m most passionate about and have fought the hardest for is facing it’s day in the Senate.

~ What do we want? Cures! When do we want them? Right. Freaking. Now. ~

We are in crunch time. 21st Century Cures has passed the House, and is now finally going to the Senate after being delayed quite a few times. August is our final time to push for this important piece of legislation. You might be asking things like, “Well, I’m not sick, so why does this affect me?” or, “I don’t have a rare disease, so why do I care?” I’m here to answer those questions.

Health legislation affects everyone. Yes, you might not be sick. Today. But health can change in the matter of seconds, and (God forbid) it ever happens to you, you’ll be hoping that 21st Century Cures in action to produce treatments and cures. Cures are for everyone NOT just rare disease patients. This affects cancer patients, this even affects the hot topic zika virus. But, OPEN Act (something I’m incredibly passionate about that gives bio pharmaceutical companies incentive to make off label medication on label for rare diseases that otherwise wouldn’t have treatments) is only for rare disease patients.

So then comes the question again, “Why should I care?” Because, 1 in 10 people have a rare disease. By that statistic everyone knows someone with a rare disease. So, get involved and care for your bother, your mom, your niece – whoever it may be because without these vital pieces of legislation they might me in the same situation as me…stuck living on borrowed time and who knows how long that lasts for?

For more information about Sick Chicks, the international community all about empowering young women with all types of chronic illnesses, visit their website, or go to their social media pages on Facebook, Twitter and Instagram

 

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

Spotlight Story Program: Katy’s Story

Meet Katy Baker

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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