Spotlight Story Program: Meet Asia-Jorden Alexander-Smith

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

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

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

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

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

Which, of course, they did.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Who am I today?

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

Spotlight Story Program: Meet Abbie Stapleton

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

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

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

Every time I was told nothing was wrong.

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

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

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

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

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

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

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

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

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

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

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

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

Spotlight Story Program: 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.

All of Those Exhilarating Peaks and Mega Excitements of My England Travels for InvisiYouth Charity

August 31st 2017

I recently took a trip to England all in the name of expanding InvisiYouth’s new programs and meeting with some of the amazing InvisiYouth supporters we’ve come to love and support over the years and charities we’ve admired for a while.  We have heard from some many of you that you wanted to hear all about my trip, and how I was able to handle all of that travel.  Now…I cannot give too many specifics about our new programs because we’re in development (and really, what would the surprise be if we told you everything before our prelaunch)!  But I can certainly share all the behind the scenes of my England trip and travel.

There are two big reasons why I wanted to make sure InvisiYouth made its way across the pond to England as our first major international InvisiYouth trip. One was the fact that England has been the first and most overwhelmingly supportive community since the day we launched.  The first teens and older youth with chronic illness and disability to follow InvisiYouth were all British.  And the first charities to reach across and want to lend support to InvisiYouth’s mission were from the United Kingdom.

That support network has continued to grow during our two years. We’ve even had an InvisiEvent in London last autumn, proving that InvisiYouth reaching beyond geographic, we are designed for older youth and can reach them anywhere!

The second reason to go to England was due to our Charity Friend role in the first Superhero Series Triathlon.  This was England’s very first adaptive disability triathlon, where people of all ages, disabilities and illnesses could compete in swimming, running and cycling with as much support and adaptive equipment as needed.

With the backdrop of the 2012 Olympics venue of Dorney Lake, the event was going to be unlike anything experienced before.  And with InvisiYouth having a group of teams all competing on behalf of InvisiYouth to fundraise for us, we had to make sure that we were there supporting them on their amazing job well done.

I have to say, what made the experience of bringing InvisiYouth even further into the UK even more special was that I was able to bring my entire family over with me, and getting some awesome memories of family time included in the work trip.  When life gets so chaotic and crazy, which can easily happen owning a charity and almost 25 years old, it is special to make memories with your family.

These are the people that have been my support system throughout my entire life, and even more than most families because they have become my rock throughout my health struggles.  Going through a chronic illness, growing up and finding myself as an adult with health struggles, is more complicated and challenging than any amount of words can describe.  But it has been my family that has help pull me through all the complexly stressful hardships that having RSD and EDS can really bring into your life.  I am thankful for them beyond belief, for their love and devotion, and their support of InvisiYouth Charity and our mission!

The England experience was an amazing opportunity to meet with individuals and charities who are going to be part of this new, evolving chapter of InvisiYouth Charity as it expands its advocacy education with our new tools and programs.  These illness lifestyle management tools are going to be the backbone of InvisiYouth where our events and speaking engagements will feed off as we continue to grow in the years to come.

I have always said that InvisiYouth’s focus is the age demographic in the illness/disability community, not the specific illness or disability, and we focus on the nonmedical side of the medical experience.  There are so many facets of life outside of illness when you live with one, so InvisiYouth cannot be more excited to provide support to help these young people live life and navigate life with illness so it can be fun, empowered and fulfilled in all its unique, adapted ways.

It is important for InvisiYouth to have more than just supporters in the UK, we need to have partners and lead volunteers in these other regions in order to engrain and expand the InvisiYouth tools and mission.  So it is completely obvious that these British older youth and charities will become part of our expansion and part of the InvisiYouth family. I am literally ripping at the seams wanting to share with you how fantastic each of these meetings were, how amazing these people are, and how completely overwhelmed with joy the InvisiYouth team is to know these organizations are going to be part of something we’re creating.

It is a massive THANK YOU to the always dedicated nonprofits like Once Upon a Smile, English Federation of Disability Sports, The Mix UK and CP Teens UK.

It is a gigantic THANK YOU to the empowering and fearless leaders like Sarah Alexander, Chloe Tears, Catrin Pugh and Emma Franklin.

There were even so many other British older youth and charities that we didn’t get to meet in person but we are going to be connecting with through the powers of technology and Skype now that we are back in the states.

Now, coming off such a successful meaningful and fun trip, we gotta break down the peaks and pitfalls of travel with a chronic illness like RSD.  I always joke that the pain and symptom peaks feel worth it when the experience is so worthwhile, and going over to England and creating these connections to expand InvisiYouth’s work even deeper into this nation was worthwhile.

Sitting on planes for almost nine hours straight doesn’t work well with RSD, so you must accommodate to your medical needs.  Getting medical documentation from doctors about being about to move around plane, to have people required to sit near you to help if side effects arise, all important to have.  And if you’re like me, and you are partially bionic like I am with rods and screws in my spine, then it’s always a good idea to have a medical letter notifying your metal (titanium or not) because it’s best to be safe when you’re going through airport security.

Make sure you have your own checklist for your medical needs (like medications, adaptive equipment, and what I call ‘checkup tools’).  I always like to make sure that my staple backups of support like Tylenol, KT Tape, bandage wraps, mini heat packs, resistance bands, and much more.  And you gotta make sure your wardrobe can match too.  Bringing additional layers when I deal with my limbs going too cold, shoes that can adapt to swelling easily, and dresses with slits so I could easily bring respite to my knee.  All these fashion tips made my travel easier.

But a major savior for me was timing.  I had to make sure my schedule was planned with work, with touristy stuff, as well as my medical rest time.  I had to make sure that when I was travelling, whether on a train, a cab, an Uber ride, or even a plane, that I was using my off-time wisely to recuperate from my symptoms to make it through each day.  And when I had resting time at the end of the day, it was all about heating, massages and elevation.  When you put time into your travels to focus on your health, it actually becomes a true travelling vacation and fun experience.

Yeah, when I got back to the states I had to put in some additional PT sessions, resting time and acupuncture, but with some focus on how to combat travel with a chronic illness, you can get through anything and ease what can be a setback on the return home.

Truth be told, I think England is now going to be a staple trip for Team InvisiYouth each and every year!  And while we’ll be having a team of supporters in the country year-round hosting and supporting all things InvisiYouth, I’ll be making sure that the UK is a top priority visit for us as we grow.  Not only did I love the people, culture, architecture, and cities, but I loved how warmly InvisiYouth’s mission and belief system was received and that deserves lots and lots of more England trips to come!

So…where will I be heading next for some InvisiYouth fun and work?  You’ll have to check out the InvisiYouth website for next month because we’re crossing country borders yet again!

~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: 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.