Joel
When I started experiencing symptoms, I attributed them to stress, even though I was vomiting and had diarrhoea almost every day. In my heart, I think I knew something was wrong but facing that was incredibly difficult. When I finished my animation degree, I really thought things would start to improve – but they didn’t.
After a few tests, the doctor told me that it was likely that I had a form of Inflammatory Bowel Disease. The next step – getting a diagnosis – was its own journey. After being put on a waiting list to get onto another waiting list, we decided to turn to private healthcare for my diagnosis. I know that for so many people, waiting for a diagnosis can cause lots of complications. I was hospitalised in September 2024 due to my worsening symptoms, but I was then put on infliximab, which has really helped me to manage to my condition.
Having an invisible disability is a mental battle as much as it is a physical one. Unfortunately part of living with IBD is the unpredictability of it all. Although I found that I had less physical pain to worry about, my mental health started to decline. I really needed that extra support to help me navigate this unfamiliar stage of my life. I’m very grateful to everyone who has helped me find my “new normal”. My new normal is not the one I had before, and I’ve had to really learn how to take care of myself.
My diagnosis has driven me to do more to raise awareness of the conditions and support others living with IBD. I was lucky enough to meet with my local MP and the leader of the Liberal Democrats to bring IBD to their attention and share the struggle that many people go through to get a diagnosis.
This World IBD Day, I want to remind everyone living with IBD that your struggle is real and you are seen, and that there are people out there ready to support us to get the help we need. Every voice matters, and I hope that my story can help others find the courage to speak up.
Emily
When Joel came back from university after finishing his degree, the symptoms he had been experiencing only worsened. His journey to a diagnosis started well and we were relieved that the first doctor who saw Joel took his symptoms seriously, but we know this isn’t always the case for people living with IBD. We waited to hear from the hospital about when Joel might be able to have a colonoscopy but we heard nothing for weeks. Joel was losing weight and he was in agony all the time. It was heartbreaking to watch him in pain and feel unable to do anything.
When we finally managed to get in touch with the hospital, we were told that it would be weeks before he would be seen by a consultant and even longer until he would be able to have a colonoscopy. We were devastated and made the decision to use private health care. We had never considered this before, but we were desperate.
Within a month, Joel had been diagnosed with Crohn’s Disease and started on regular treatment that changed his life. The toll on Joel’s mental health and the whole family has been huge. Support for families is vital, and I know that Crohn’s & Colitis UK offers so much support.
In October 2024, I held a Cake and Cuppa event at our home and raised over £600 for the charity. It was a great opportunity to raise awareness. We also had the opportunity to meet with politicians to talk about how difficult it is to get a speedy diagnosis. We explained how this affects people’s everyday lives.
The courage that Joel has shown throughout his diagnosis and treatment has been incredible. His determination to support others and not give up makes me so proud.
Emily
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