Another World IDB Day has come and gone as quickly as a bout of Crohn’s induced nausea. It was a day when Crohn’s Disease, Ulcerative Colitis and Bowel Cancer patients all over the globe were trying to raise awareness of the complexities of their conditions. For me posts and tweets were flying around social networking like wildfire, but then I have Crohn’s and know lots of people with IBD too. What of those who have never heard of the conditions? Would they take the time to read up on these illnesses or educate themselves on what they entail? Would they give to a charity which helps find a cure?
Myself, before I was diagnosed with it, I had never even heard of Crohn’s Disease or Ulcerative Colitis. I was baffled as to why it was such a mystery, and a bit panicked to discover the myriad of symptoms and complications which go hand in bowel with IBD. The fact that I was told I had this illness before I even knew what it was, was both a curse and a blessing. It was a relief that I finally knew what was wrong with me; after a lengthy and horrific period of illness I was overjoyed to know what was happening to me wasn’t all in my head. I’d been in pain for so long with no relief or explanation that I felt I was going out of my tiny mind. To finally have a diagnosis confirmed was a blessed relief.
The problems arose when I was told what was wrong. Due to the fact I had absolutely no knowledge of Crohn’s Disease, my initial information came purely from hearsay, vague explanations from doctors, experiences from friends and family and that deadliest of sins; GOOGLING. I was spoon fed horror stories about what was to come, no malice behind any of it, just blind fear on the part of my loved ones. They panicked just as much as me and like myself, assumed the absolute worst. They were afraid I was going to die and so was I.
To know you are about to start living with a chronic and incurable illness is terrifying. This is why I get so frustrated that there is still such a lack of knowledge and awareness surrounding IBD. It stifles people’s confidence in their ability to live a ‘normal’ life with the condition. The ‘invisibility’ of these illnesses can lead to shame, embarrassment and isolation. It can be aggravating and often upsetting, having to explain what your illness entails over and over again to a seemingly endless sea of blank and uncaring faces. When something is misunderstood it can seem although you have to justify yourself repeatedly simply in a bid to help others understand.
Continuing to raise awareness of IBD is something I am passionate about and will plod on with, whether people are sick reading my daft blogs or not. Taking a few minutes to learn about what the person next to you at the bus-stop or sitting beside you in a meeting is going through under the cover of their skin is nothing. The more people who are educated on IBD the quicker these illnesses will be understood and we’ll be that little bit close to lifting off that cloak of invisibility.
Written by Kathleen Nicholls from Crohnological Order