Spotlight Story Program: Scarlett Aylen’s Story

Meet Scarlett Aylen

Our latest Spotlight Story comes from across the Atlantic Ocean with a fresh take on empowerment and facing the obstacles that life can throw at us. We were so excited to hear from 20-year-old university student from the United Kingdom, Scarlett Aylen, when she submitted her story. Scarlett is an example that chronic illness and health struggles affect the entire person, both physically and mentally, and she advocates each young person should be supported as an entire being.  Her inner strength feeds into her organization RCASS, helping young people and their families after a scoliosis diagnosis. You learn so much through Scarlett’s story about resilience, advocacy, and finding ways to enjoy life.

It all started when I walked into a consulting room and saw my spine, looking horrifically and severely curved on a huge screen right in front of me. I was 12 and was diagnosed with severe scoliosis. I cried and cried to the point where the consultant and nurse had to let me leave the appointment without having one. I didn’t feel like a young girl, but now I see 12-year old’s and realized why my parents were so scared for me. I spent 9 months in and out of the worst time of my life, I was depressed and didn’t speak to my family. I changed.

I hid in a thick jumper and coat at school so nobody could see my deformed back, despite it being 30°C and summer. In the months leading up to the operation, my mental health continued to deteriorate, but the waiting list was preventing me from the operation I was desperate for. After the major surgery to fix the curve in my spine, the recovery was long. It took months. I was so scared to have water on my back. I remember so vividly having a panic attack when it was time to shower for the first time since the operation. It took me months to get into a swimming pool and I would insist on covering myself up. I couldn’t do sports anymore. I used to ride, swim and do triathlons competitively but I gave everything I spent my childhood doing, up. Every time I tried to exercise there was always an excuse. But I was on the road to recovery, so it was ok.

Unfortunately, this was just the start of the problems. I thought I would just get better. Then I started to realize I couldn’t breathe. At one point, it felt like I could barely breathe at all. I also started experiencing severe anxiety on return to school and fought with panic disorder for about a year. I went to the doctors on multiple occasions and each time they told me I was just experiencing breathlessness due to anxiety. I argued and finally got a referral to a pediatrician, who allergy tested me. She said my lungs were the age of a 70-year-old but again, it was just anxiety! Through my GCSE years, I had therapy and I thought the anxiety was gone. It was just hiding. I still could not breathe. Eventually I saw a respiratory specialist who diagnosed me with restrictive lung disease and asthma.  The scan showed that one of my lungs is half the size of the other and my heart is not in the same place as everyone else’s because of this, and that ¼ of my big lung wasn’t even working due to infection.

However, having someone take me seriously was a huge relief. I had special respiratory physiotherapy and now take medication for my lungs. Being me, I was unlucky again.

The respiratory specialist had found a screw in a CT scan of my lungs that was dangerously close to my heart and sent me back to the spinal surgeon. He told me the operation wasn’t urgent, but that he had cancelled someone’s surgery (who waited a year to have it) and that he wanted to do it tomorrow. I woke up screaming in pain. My shoulders and neck have never been the same since. The surgeon couldn’t find anything wrong in a scan afterwards, so he sent me to a pain specialist. He basically said that I had no reason to be in chronic pain so off I go. I went to a specialist and got 3 medications to help with the pain. I have 16 Botox injections every 6 months when I can afford them, and it is the only thing that relaxes my neck and shoulders. The way I would describe the pain is severe, chronic and incredibly tense. They were constantly in spasm, which was excruciating and incredibly tiring.

By the end of my further education, I had missed out on 8 months of school and college due to pain, anxiety and fatigue. I was in so much pain and anxiety during my final exams, that I landed myself in the ER the day before my last ones from a tachycardia attack where my heart sat at 190 BPM for 3 hours.  Luckily, I take medication for my heart and I am symptom free most of the time, but it again took years to diagnose since the GP dismissed palpitations and a fast heart rate as being ‘anxiety’.

Nowadays, I focus on what my body needs. Recently, I discovered that the fatigue I’d been having for years, that kept getting worse was probably a neurological condition called narcolepsy, after the GP just told me it was probably anxiety, but then tried to pass it off as ME (chronic fatigue syndrome) after one appointment. I am now getting treatment for this which is exciting!

One of the perks of dealing with conditions like mine over a long period of time (over 7 years now) is that it has allowed me to learn about myself and what works for me. I understand it now.  Before, I wouldn’t let myself rest if I was about to collapse from exhaustion, but now I give my body time to recover before I start doing things again. I have friends with ME and the tips they have given me for my conditions help me as well, even though I don’t have it.

If I have, what I call a ‘pain crisis’, where my pain is worse than the average daily pain I get anyway, I have learnt to stop absolutely everything. It is hard to do that when you have a lot of goals, but it is an important step towards managing your body. After I turned 17, I started realizing I couldn’t hide from doing the things my friends could do for the rest of my life. I plucked up some courage and started doing things like get back on a horse and going to the gym.

I took a gap year and decided that it wasn’t fair on young people who had to wait for scoliosis surgery to have no support before and after the operation, so I have decided to set up my own organization to help this and called it RCASS.

I want to help young people and their parents after a diagnosis of scoliosis. The end goal is to provide more support in the future and to register as a charity to help provide young people with opportunities to recover confidence after scoliosis surgery. It is still in the starting stage, but I can’t wait to work on it properly!

I took a gap year before I went to university and decided its purpose was to ‘challenge myself to lengths I had not done before’. I went travelling alone, I went up mountains, on hikes, skiing, jumping off cliffs, surfing, volunteering and many more activities. I am incredibly proud of myself, but I must admit, the pain was still there. My biggest achievement to date is building the confidence to wear a bikini on a beach or by a pool. I never used to wear a small amount of clothes, but gradually I have worked up and now I don’t browse the shops thinking about what can hide my back, I’d rather show it!

As for my mental health, I needed the gap year and it did me the world of good. I still have some wobbly moments sometimes, and the anxiety meant I flew home 3 times on my travelling. But overall, I feel that my experiences have made me 10 times as more empathetic, understanding and positive compared to what I would have been like if nothing had ever happened to me! Another life changing moment was when I was told ‘a problem shared is a problem solved’.

It isn’t always easy when it comes to other young people but when I got to about 16 everyone started understanding and now I am so lucky to have incredibly supportive friends after I explain my problems to them, they help me with lots of things that I wouldn’t have help with if I didn’t share my story.

I tend to joke about my past now, and although it has been a harrowing journey, I know I am the person I am today from the experience.  Time has taught me how to look after myself. Although I still have problems, I know how to deal with them both in a better mental mindset and physical one too.

Spotlight Story Program: 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.