The general awareness of inflammatory bowel disease is definitely on the increase. I have heard from people who have had the illness for many decades that the awareness has improved significantly; but if you ask me or many others suffering with the illness, it’s still not good enough. If people mention asthma, diabetes or arthritis, there’s very few confused faces. That is not to undermine those serious illnesses – but it is so clear that the taboo surrounding anything related to the bowels, means that equally debilitating illnesses like inflammatory bowel disease go unspoken about. When I say I have IBD, most people mistake it for IBS, or have heard of the illness in the form of a tummy ache or pooing too much. There is so much more to it than that and so many other symptoms related to IBD that people are unaware of, such as extreme fatigue, mental illnesses, skin conditions, mouth ulcers, abscesses and fistulas, joint pain, eye and liver problems.
Despite the gradually increasing awareness because of many amazing people that I have met through online support groups; there are still people who suffer in silence for fear of judgement and embarrassment. There are still people who fear going to work or losing their jobs because of discrimination, and looks of disgust as people assume it is contagious. There are still people who lose numerous friends and family members because of a lack of understanding. And no matter how much I, and many other people bang on about it, there are still so many people unaware of the reality of inflammatory bowel disease. 1 in 250 people suffer with some form of inflammatory bowel disease (the main forms being Crohn’s Disease and Ulcerative Colitis), and yet it is still widely unspoken about because of the taboo. It is mainly understood that while IBD is long-term and chronic, it is not life threatening. Of course it is not something that you want to hear when first diagnosed, but the risks associated with medication, and complications in surgery mean that IBD does take lives.
I have been fairly busy this past week, but receiving the news that somebody else has lost their battle with IBD meant a heavy sadness has been felt by me and most of the IBD support community (#IBDSuperheroes, #GetYourBellyOut, and the CCUK support forum). I did not know Jessica Farr personally, but I had seen her post in support groups, and identified with her situation; a young girl trying to live life with a chronic illness. Hearing this news has made me feel saddened, frustrated and hopeless but most of all determined. It made me feel sad and frustrated that there is not enough awareness of the seriousness of IBD. It made me feel hopeless that I am not doing enough to find a cure for such a cruel illness. It also makes me more determined to fight for a cure for all of us that have to keep on battling everyday until then. It makes me want to fight even harder so that the future can be one without IBD. So that nobody has to suffer like many of us have. So that nobody has to lose their friend, their love, their daughter or son. R.I.P. Jessica Farr – you were taken way too soon. You, your friends and family are in my thoughts.