Sara’s story: “It was daunting to have to self-manage without much information so early in the scleroderma journey”

Sara was diagnosed with scleroderma in February 2020. She had been constantly ill with severe infections for two years, as well as symptoms of Raynaud’s, and suspected an autoimmune condition due to lupus being in the family. In January 2020, her GP sent off bloods, which came back positive for scleroderma and she saw a rheumatologist a week later.

My diagnosis came at a very difficult time; I was signed off work with fatigue, chronic insomnia and anxiety, my grandmother was diagnosed with terminal cancer and I had suspected COVID-19. It was a really overwhelming experience, especially with the pandemic and lockdown. After a difficult few months, things started improving and I was able to work from home.

I recovered relatively quickly from COVID-19, but unfortunately developed ‘long COVID’, it is thought that the scleroderma significantly delayed my recovery from the virus. My treatments and ability to see specialists have also been delayed and it was daunting to have to self-manage without much information so early in the scleroderma journey. Physiotherapy hasn’t yet been possible, and I had to wait to see a dermatologist, although I have quite significant skin issues. I could only get a video appointment, and was given a ‘diagnosis’ of possible psoriasis linked to my scleroderma, but this was without an examination.

Discovering the SRUK (Scleroderma and Raynaud’s UK) website was an absolute lifeline, and it was great to know that I wasn’t alone. I have been watching their various webinars and reading the myriad of information on their website and social media pages. This was often my only source of information, so to try and give something back, I have been actively supporting them by raising awareness – I was even featured on BBC News 24 and Radio 4 – which was nerve-wracking, but great to feel I was helping others. I have also fundraised through a sponsored walk and hope to be able to do more fundraising once lockdown has ended.

The lack of control that comes with my diagnosis scares me, but I try not to let it overwhelm me. I’ve been seeing a psychologist for several months, which has really helped my mental wellbeing, and helped me come to terms with my condition, which I knew nothing about before the diagnosis. However, it was a struggle to get access to formal health support to begin with.

Whilst I have started to feel more in control of my condition, there have been ongoing issues with my health that were made more difficult with COVID – I needed urgent gallbladder surgery last year but had to wait months; and then it was postponed due to lockdown. Luckily, I have had the surgery now, but it was a horrible experience having to wait for nearly six months whilst in pain…. a hardship I know so many people are currently facing. My grandmother also passed away before Christmas, and I had some challenges at work due to my condition, which just increased my stress level after an already difficult year.

I am determined to keep as informed and in control of my condition as possible. I’m also due to get married this year, so I’m hoping that restrictions might be lifted, and that this year will be much better than 2020. All you can do is try and focus on the positive things in life, and all the many opportunities we are lucky to have. Then, we can get through whatever life throws at us.

RAIRDA surveyed 1,300 people with rare autoimmune rheumatic diseases about their experiences during the COVID-19 pandemic, including asking about how their care had changed. We found that even as early as April and May 2020, 80% of people had experienced some kind of change or disruption to their care. Read the full report here.

1 thought on “Sara’s story: “It was daunting to have to self-manage without much information so early in the scleroderma journey””

  1. Good to read another person’s experience with Scleroderma. Mine is internal Scleroderma, in that it has damaged my lungs very severely. Not easy to cope with. Fatigue is a big problem.

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