Chronic Illness Awareness: Leyla's Story

Welcome to another blog post, we are so honoured to be able to amplify the voices of our followers with Chronic Illness. This week Leyla kindly shared her story with us.

Leyla's Story

When I was a little girl I wanted to be a dancer, I went to every dance class you can think of; ballet, tap, modern, jazz, and when I left school I used the money my parents had saved up for me from being little to attend performing arts school. Throughout my teenage years, people would comment on my good posture, how I would carry myself head up, straight back, and full of energy. Then my twenties happened, I discovered nights out and boys that took priority above me performing. The natural progression was to quit college, get a job, move out and live with a boy. The only thing that mattered to me was fun and earning money to maintain that way of life. At 24 I experienced a traumatic relationship, luckily I had a good head on my shoulders and left the relationship after experiencing violence, but at that young age, I didn’t understand the importance of taking time to heal from trauma.

Two years on, I wasn’t in the best headspace when another boyfriend commented on my back which appeared to be bent slightly on an angle. Mortified, I spent weeks staring at my slightly off centre-back and rib cage which I had never previously been aware of. Eventually, I went to see the doctor who arranged for me to see a consultant, and nearly a year on I was diagnosed as having scoliosis.

Scoliosis is a condition that usually starts from a young pre-pubescent age, and if picked up early enough can be corrected with a back brace or surgery. This is preferable when a child is still growing as the bones have time to adapt and a person with scoliosis has a chance of growing up relatively problem-free. My scoliosis had never been noticeable before, so much so that my parents and ballet teacher found my posture to be better than average. This is unusual as most of the time, simply touching your toes can highlight a curvature of the spine.

My full-body X-ray showed my spine was curved 38.5 degrees to the right, my bones and joints were healthy, and considering the curvature, I was physically fit. If a curvature of the spine is above 40 degrees then an orthopedic consultant will recommend placing metal rods and fusing them to the spine. This operation can take 10 hours and comes with risks which as a healthy 26-year old I wasn’t prepared to take.

Not long after my diagnosis I met the love of my life, we went traveling to New Zealand, bought a house on our return to the U.K, and got a puppy. It was around this time I decided to start the first of five years returning to education to train as a social worker. I was pretty happy, we had our struggles like any couple but then my pain started aged just 35. I had always suffered from Temporomandibular joint disorder (TMJ) or a ‘clicky jaw’. It was something which I’d worn a bite guard for since I was a child, but this pain I was experiencing in my jaw joint was so much worse. I went to multiple specialists over the years and was sent home with barely an examination. “Just eat a soft diet and don’t open your mouth too wide” was a common response. I couldn’t chew without pain, yawn, or shout, and the pain would spread to my head, my neck, and sometimes I would be in tears in absolute despair. Not one professional would listen to my concerns. One day a friend of mine who is a chiropractor, asked if she could work with me to help with my pain- she wondered if some of the traumas I had suffered in my early twenties could have aggravated my issues and made changes to my body and how I managed the pain. It was the first time that I considered any contributing factors to the rapid onset of my scoliosis and it started to make me think about advocating for myself.

I am now 38 and over the past 12 months, I have fought to get the support and tests I knew I needed for all my symptoms. It’s been a slow process as we are living in very different times right now with the Covid-19 pandemic and the NHS needs to prioritise some conditions which I understand completely. I have a fantastic pain management consultant who has supported me to get an MRI scan, a bone scan, physiotherapy, and acupuncture for my jaw, back, and neck. It’s early days yet but I have been diagnosed with osteoarthritis and disc displacement in my jaw, my existing scoliosis and to add some fun to my day I also have a diagnosis of Pre-menstrual dysphoric disorder (PMDD). So on a very rare day when I’m not in pain, my body likes to remind me that my hormones hate my brain and I get to feel super down and depressed! Throughout all this though, my incredible partner has been supportive and I have the most amazing friends who make me smile when things feel hopeless. I take my dogs out walking every day and try to practice anti-gravity yoga and stretch when I feel up to it. I will qualify as a social worker this summer and am aiming to work with people who have disabilities as I want to use my advocacy skills to help others. Some days all I do is sleep and feel sad, but I am a strong person who will continue to fight for myself and others because that is who I am inside.

People must remember that how people look on the outside, doesn’t always show how they feel on the inside. Invisible disabilities are tough, but by raising awareness we have strength in numbers. I absolutely live by the quote;

“Everyone you meet is fighting a battle you know nothing about. Be kind. Always”.