Living with Crohn’s disease can be complicated, often times many people overlook the symptoms that don’t revolve around the bathroom. They don’t realize the complications that can come with the illness and the medication. The commercials for Humira or Entyvio don’t really give you a realistic outlook at what it’s like with Crohn’s. They don’t show you curled up in a fetal position in pain, the first time you freaked out seeing blood in the toilet, the amount of time you spend on the toilet, they don’t show all the diet restrictions, the joint pain, the anxiety and depression. They really don’t prepare you for getting diagnosed yourself.
It took over 6 months to get diagnosed, but being only 9 I think the words hit my mother harder than they hit me. I didn’t really understand any of it. It fell on her. When you get diagnosed I think the first question everyone asks is, “Is it curable?” And it doesn’t do anything for your nerves when they tell you it is not. They will tell you your options such as pills, biologics, surgery, so forth. They do not tell you that you will miss a lot of school or work.
They never expected me to miss my prom or senior year, or that I would be stuck at home for college because I was recovering from my ileostomy surgery where I spent my 18th birthday. They didn’t tell me that after missing so much time at school, people would stop to care and would eventually move on and replace you. They didn’t tell me that people would make jokes about my illness, or my prednisone puffy face, or that the joint pain would render me helpless some days to the point where I would become dependent on a cane or wheel chair.
They smile and tell you that remission is possible; they don’t tell you that once you achieve remission that if your health waivers even the slightest the anxiety of it all will creep back. They don’t tell you that when you fall out of that remission you will miss the life you briefly had.
So when you get your diagnosis, it’s okay to be sad and upset because they won’t tell you about it, it’s okay to go to therapy to have someone to talk to because you are going through a lot and will be going through a lot for a while. Make sure you have a good support system, and understand your limits because some days you will feel good and other you will need to rest, and that’s okay. Even if all you do is manage to get up in the morning and take your medicine, you are still worthy if love and acceptance.
This post was submitted by one of my new favourite bloggers, Grace, from https://theecrohniegrace.wordpress.com/
Grace’s blog is about her life with various Chronic Illnesses. She has Crohns, Gastroparesis, Joint Hypermobility Syndrome, and is also being tested for Classical Ehlers Danlos Syndrome.
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