Sara McAreavey's Story

“My diagnosis came at a very difficult time; I was signed off work for 9 weeks 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, but after a difficult few months, things started to improve and I was able to start working again from home.

I recovered relatively quickly from COVID-19, but unfortunately developed ‘long covid’, which included a partially collapsed lung, and long-term loss of taste and smell. This was followed by parosmia (a distortion in taste and smell), which was in itself very distressing. It is thought that the scleroderma also significantly delayed my recovery, and it’s taken a lot longer to ‘get back to normal’ than my partner, who contracted suspected COVID-19 at the same time as me.

My treatments and ability to see specialists have also been delayed and as this was so early in my scleroderma journey, it was daunting to have to self-manage without much information. The only treatment I was able to access was a low dose of nifedipine for Raynaud's, and some amitriptyline for pain.

Physio hasn’t yet been possible and following a long wait to see a dermatologist for my skin condition, I was only able to get a video call appointment. I have quite significant skin issues, where the skin is extremely dry and itchy, and flakes off my face and scalp, both of which flare up with stress, which is hard to manage and almost impossible to stop. During the video call, I was given a ‘diagnosis’ of possible psoriasis linked to my scleroderma, but this was without any examination or testing.

When I discovered the SRUK website, it was an absolute lifeline and it was so great to know that I wasn’t alone.  I have been watching their various webinars and reading the myriad of information they have on their website and social media pages. In a lot of cases, this was the only source of information I had, and I don’t know what I would have done without their support. To try and give something back for all of their help, 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. Exercise helps me a lot, but it was hard at first with pain and fatigue, and because I was shielding, but its definitely something I’d recommend to others with rare conditions like mine, as it helps physically and mentally.

The lack of control that has come with my diagnosis scares me, but I try not to let it get on top of 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, so I just talked to people as much as I could, practiced mindfulness and avoided the news as much as I could to help with my mental health, all of which I’d recommend to anyone out there who is struggling. I am also enjoying gardening at home! During lockdown, and especially whilst shielding, I felt very isolated and missed going out to the countryside. So, I decided to try and bring nature to me and invested in a number of house plants (all with names of course!), and flowers and shrubs for the garden. This has not only been great for my anxiety but has also given me a different way to exercise, especially when I couldn't leave the house.

Whilst I have started to feel more in control of my condition, there have been ongoing issues with my health, which have been made more difficult due to COVID – I needed urgent gallbladder surgery in the middle of last year, but had to wait months before I got an appointment for the surgery, and then it was postponed for another month due to lockdown. Luckily, I have had the surgery now, but it was a horrible experience having to wait for nearly 6 months whilst in pain…. a hardship I know so many other people are currently having to suffer through. 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. Whilst 2021 hasn’t started very well for me, I am determined to make sure that I continue to stay informed and in control of my condition as much as possible. I’m also due to get married in July this year, and am hoping restrictions might be over by then, so staying optimistic 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, and by doing that, we can get through whatever life throws at us. “