How did I react to my diagnosis?
I started having active symptoms of Crohn’s disease at about 12/13 years old, told my parents about my symptoms the end of my senior year of high school and finally received a diagnosis the summer before starting college. In middle school and high school I endured weeks and months of daily bleeding, pain, nausea, diarrhea up to 15 times a day and daily chills. There were times when the pain was so bad that I thought I was going to die. Why didn’t I tell anyone? Well I suppose it was a mix of being afraid, embarrassed, ashamed and hard headed. I held out for the times, no matter how brief, when my symptoms would temporarily improve because I knew there were times when I would feel better. If nothing else I received an interesting first hand education on the natural history of Crohn’s disease. That’s a silver lining for you!
Receiving a diagnosis of a chronic disease is a life changing moment and one that I am hardly alone in being able to recall vividly. The fact is that even though you may have been living with the condition for years, things change once you have a name to go along with your symptoms. I behaved and thought of myself differently after receiving a diagnosis, and I know that other people began treating me differently (usually in annoying ways like monitoring what I could eat 24-7). Anyways, the first overwhelming emotion I recall when I received my diagnosis was relief. I spent years wondering and dealing with pain in solitude so finally being armed with a name to go along with what I was experiencing was empowering. It was like putting a face to my internal enemy. Crohn’s disease. The worst part of seeking a diagnosis, in my experience, was voluntarily accepting that you are venturing into the unknown. To willingly put everything on the table to work with your doctor to find out whats wrong can be terrifying, especially for a kid. It was for me.
Over time relief changed to guilt. I felt guilty, and continue to regularly feel guilty, because I knew how significant of a burden I had become on my family. My medications were/are expensive, my hospitalizations were/are costly and time consuming and my appointments and tests are expensive/time consuming for others. For years I have demanded so much more of my parents time, attention and money as compared to my other siblings that it is easy to feel guilty. I still am a ‘serial apologizer’ and found myself constantly saying sorry to everyone during my most recent hospitalization. I know these people love me and would do everything they’ve done a hundred times over but at times I wonder if it would be better to just deal with these issues alone and let everyone else live their lives. Who knows.
The most troubling emotion I have dealt with since receiving my diagnosis is anger. This was probably there before the diagnosis as hot tempers run in my family 🙂 but it really came out post diagnosis. This was never really a self pitying “why me?” kind of anger instead it was a “screw everyone else and their petty problems” issue. It took me a long time to understand that everyone has very real struggles in their lives and just because I have Crohn’s doesn’t mean I face more significant challenges than the other people in my life. It was easy for me to think that other people have so much easier lives but really you have no idea what people go through. I was angry because I belittled what I perceived to be petty issues in other people’s lives and pushed them away. Do not fall into this trap. It took me a while to stop looking at my issues as the only ones that mattered and realize how lucky I am.