When I was 14, I experienced a very bad stomach flu that lasted a week or so. This flu kicked off a year-long flare-up of ulcerative colitis that led to me becoming very sick and debilitated. At age 15, I was hospitalised for a month, diagnosed with UC and began treatment.
I was on immunosuppressants for about 5 years and I also stayed on a maintenance dose of anti-inflammatory medications. After my most recent flare-up I switched to biological therapy.
Being diagnosed with IBD was both a relief (to know what was going on) and a scary revelation. The symptoms of UC can be quite frightening (particularly the bloody stools and chronic abdominal pain). Being told I would be on medication for life from a young age was also quite daunting.
When I was undiagnosed, I was extremely worried that I had bowel cancer and didn’t know what to do. When I was brought to see a specialist, I was so relieved to be told that I had IBD and that it was treatable and manageable.
It really only hit me as I got older, and had many flares, that a chronic illness also presents its own unique challenges, although I have found the more open I am with friends, family and my employer, the more accommodating people tend to be.
At first I was unwilling to talk about what IBD was and how it impacted my life. Since I was diagnosed as a teenager, I was afraid of how people would view me if I spoke about what was going on. I actually ended up missing my Junior Cert because my first flare was so bad. A lot of people in my secondary school noticed my absence during the Junior Cert and assumed I’d had some sort of breakdown due to exam stress. I never wanted to correct them in a way, because I wasn’t yet comfortable to talk about my UC. This seriously affected my confidence for many years.
As I got older and dealt with other challenges in life, I learned that there was nothing to be ashamed of and that speaking openly about my symptoms was actually quite liberating. All of my close friends and family know about my UC and my partner in particular is so supportive. I am incredibly lucky in this regard.
When I was in transition year, following my first recovery from a flare, a couple of good things happened in school. I starred in my school play and set up a small online business. I also realised that I wanted to be a scientist.
I completed 2 degrees (BSc and MSc) in biomedical fields and travelled during both (to Sweden and the US) to complete my thesis projects. I worked in science for a few years between degrees and published some articles in paediatric neurology. Eventually I was awarded a joint-funding to complete my neuroscience PhD in the Royal College of Surgeons. At the same time, I got heavily involved in science communication and won a national competition for a video I made about epilepsy.
My UC has remained part of my life and can sometimes interrupt my studies/work. Being open with my employer and my funders is important to ensure that I can finish my project and achieve my goals.
If you develop IBD young, try not to be too frightened and definitely be kind to yourself. You don’t need to prove anything to anyone – your condition does not define you. Speak to others who are going through something similar or listen to other IBD patients – it’ll make you feel seen and more at ease.