The story of Eve
After a long chest infection from November to December 2019 I started developing painful oral ulcers which also spread down my throat, I lost count at 50 in one go. I was so puffy and swollen, I couldn’t eat, nobody could understand me speaking as I had to hold my mouth at such a funny angle to try and avoid my teeth scraping them. Brushing my teeth even with a baby toothbrush was the worst part of my day as I’d accidentally scrape the wet scraps off. It was absolutely awful.
I then developed ulcers in my genital area at the same time which were unbearably painful. My story is very unusual in that by my second appointment with my GP Behcet’s was suggested as a possibility and after being tested for all STIs at the GUM clinic (where the nurse kept insisting I had herpes and just couldn’t accept it, an experience many of my fellow sufferers have also had!) the doctor on call also independently recognised my symptoms as Behcet’s.
Since then I have had my diagnosis confirmed by a consultant remotely due to covid. Steroid treatment had more side effects than benefits so I gradually discontinued it with my doctor’s supervision and will be starting a new immunosuppressant in two weeks.Â
My story isn’t a particularly positive one – it’s been a very intense year of diagnosis, flare ups, pain, fatigue, issues with medication and personal change. I’ve had to go part time at my job at a time when employment is very precarious for everyone, and had to suspend my PhD.
It’s had a huge knock on effect on my mental health, and I hope being honest about how the experience of pain and the physical changes such as steroid weight fluctuations, scarring, hair loss etc which come with Behcet’s and it’s treatment can impact your self esteem and specifically for me really exacerbate depression and anxiety resonates with some people.Â
My partner has been an absolute rock for me throughout this whole thing and keeps my hope for a better future strong. He makes me feel better even on my worse days, and just sits with me until the things I can’t help eventually pass. I hope all people struggling with a rare disease can lean on a lover, friend or family member who can share the load, and feel comfortable opening up about the emotional challenges we face on top of the physical ones. As rare disease sufferers, we have to be there for each other and be ready to advocate for ourselves and our fellow sufferers all over the world!
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