Hannah’s Story of Localised Scleroderma

Date: Tue 21st May 2019

Here's Hannah's story of how overlapping diagnoses of lichen sclerosis, localised scleroderma, hypermobility, fibromyalgia and irritable bowel syndrome changed her life forever.

Everything in my life changed when I found a strange bruise on my side, just a few months after a throat infection went septic and hospitalised me. At first, I did not think it was anything to worry about, but I had no idea that I had already said goodbye to my normal life. Over the next ten years, my life would change dramatically and normal would become a distant memory.

One bruise turned into several and I watched in horror as the mysterious lesions spread like wildfire up my rib cage. As an emotional 14-year-old, my mind immediately went to the worst-case scenario and I couldn't stop picturing myself strung up to machines fighting some mysterious illness. While my instincts may have been on the dramatic side, I wasn't far from the truth.

My mum took me to the local GP but an impatient doctor dismissed me. She informed me that I had a rash caused by a belt. As the lesions were nowhere near where a belt would be, I was mystified. As more symptoms popped up, including stiff joints and nerve pain, I hounded my GP surgery for the next six months.

Following a lot of tearful doctor's appointments, a sympathetic GP listened and acknowledged that there might be an underlying problem, especially as I had also developed widespread chronic pain. I was referred to a rheumatologist and a dermatologist. I finally felt like I was one step closer to an answer.

My dermatologist assembled a team of consultants to diagnose me. I was the first case of my kind they'd seen and he had no idea where to start. In a matter of months my life became abnormal and revolved around finding a diagnosis.

Eventually I got one and quickly became accustomed to life as a guinea pig. My consultant's diagnosed me with lichen sclerosis and localised scleroderma. My rheumatologist confirmed that I had hypermobility and years later I was diagnosed with fibromyalgia and irritable bowel syndrome.

But, while I was being treated, my symptoms kept flaring up. I began losing dexterity in my hands and had to use laptops for all my exams. I struggled with developing symptoms and hypersensitive skin. I wrestled with mobility issues and faced daily intense pain and never-ending fatigue.

Although the symptoms were physical, they impacted my mental health too. As a self-conscious teenager, I was horrified by the mess of scars that were constantly changing on the surface of my skin. I hated them and what the condition had done to my life. I endured flare up after flare up, all treated with varying degrees of success, and I got lost in the medical whirlwind of my life.

The ceaseless battle wore me down and nowadays I don't remember what it's like to feel well. I don't remember what it's like to live without pain and I certainly don't remember what it's like to feel nervous about needles or procedures.

For the longest time, I obsessed over the loss I felt. I mourned my old life and I refused to embrace my new one. I resisted my condition with every ounce of strength I had and, as a result, began to identify with it too. I defined myself by it and my illness soon encroached on every aspect of my life – mental and physical.

I continued on in this cycle for years before I finally woke up to what I'd been doing. While chronic illness may be infuriating, I couldn't let it take more from me. By surrendering to its power, I'd lost my own.

I changed everything in my life to appease my condition's needs – from my career path to my daily routine – but what was the point of all that if I wasn't enjoying my life? I had to learn how to balance caring for my physical health with every other aspect of my life.

So, I embraced the abnormality of it all and made a conscious effort to acknowledge all the great things too, including my partner, my family, my friends and my career. I accepted my illness but also realised that it is the least interesting thing about me.

Hearing about SRUK's work and joining their Youth Advisory Board opened up my world. I met other young people facing the same difficulties, people who refused to be defined by their condition. Eventually, I saw myself in the same light, as someone worth more than the obscure medical jargon clouding up their life.

I may struggle every day but I am so much more than my illness and I'm excited to see how I will continue to grow in the future. Sickness is a part of me, but that's all it is, a singular part.

Thank you for reading Hannah's story. If you would like to help support others in her position who have been diagnosed with scleroderma, please donate here.