Crohn’s and Colitis Awareness Week was created by U.S. Senate Resolution 199, “A resolution supporting the goals and ideals of Crohn’s and Colitis Awareness Week, December 1-7.” S. Res. 199 expresses appreciation to the family members and caregivers who support people in the United States living with Crohn’s disease and ulcerative colitis. It also commends health care professionals who care for Crohn’s disease and ulcerative colitis patients and biomedical researchers who work to advance research aimed at developing new treatments. In observance, I’m going to discuss my experiences with Crohn’s disease, which I’ve had since 1992.
When I was finally diagnosed with Crohn’s disease, I had been seriously ill for several months. Three doctors had already misdiagnosed me, and I wasn’t sure I’d find out what was wrong with me this side of the grave.
During the struggle for a diagnosis, I began to believe that, once my troubles had a name, they’d be over. It was magical thinking. The doctors would figure it out and treat me, and that would be that.
Once there was finally a name – Crohn’s disease – for my troubles, I felt this sense of relief. I’d heard of the disease, but I really didn’t understand it at all. There was a pill for this, right?
The reality that I had to face was that my diagnosis didn’t change my health. I continued to be seriously ill for two more years, and only ostomy surgery put me into remission. Yes, there was a pill. Turned out that there were 25 pills, every day, and none of them worked. There was no magic, and I was never not going to have Crohn’s disease again. Twenty-four years later, I’m still fighting it every day.
But everything else changed. The dynamics of my relationships changed. I went from being the “responsible” one to having to lean on family members who weren’t used to propping me up. I found out who my real friends were. I had to give up an intended career path for one that I never dreamed I’d follow (but that I thankfully love).
Most of all, I changed. Physically, I am sometime a stranger to myself. I don’t think I’ll ever get used to the scars from my surgeries. I wasn’t ever an athletic person, but the fatigue I face now can sometimes be overwhelming. It will never not suck that my immune system has to be suppressed to keep it from attacking me.
But all the changes have not been bad. The me with Crohn’s disease is more patient, more understanding. I’m also more assertive; I question doctors and will leave one in a heartbeat if I don’t think I’m getting what I need. And I’ve taken more chances and opportunities. After all, life is short.
Diagnosis is rarely what we want it to be: the end of a scary road. It is more often the beginning of a long journey where the things we most want to change, like our ill health, is not what ends up changing. We are.