Diagnoses are tricky for those of us with chronic illness. We all know the emotional cocktail that comes from waiting for test results. Part of us waits in anticipation hoping that they will find something, anything, that will allow us to move forward and feel better. The rest of us waits is fear of the unknown scared of what those tests could or could not say.
Then when the news comes and we get that news we are stopped in our tracks. I remember going in for an exploratory surgery that was meant to find the endometriosis that I had been told I had for over 3 years only to wake up and hear that they had found nothing. Then, four years later I went in for a colonoscopy after experiencing some blood in my stool. I was assured that it was probably hemorrhoids, but when I woke up I was told that it was ulcerative colitis and shown pictures of the inside of my bleeding colon. This week I was waiting on results from a comprehensive stool analysis and out of nowhere I got an email from my doctor informing me that I had tested positive for a parasitic infection and a tapeworm… (WTF?) The emotions of these events always hit me in stages. At first I take it in stride because it is honestly overwhelming to take it all in. Then I go into the laugh it off stage where I just say something along the lines of, ”Oh whatever, this would happen to me” Then I go into the questioning and shocked phase where I just think back over past events trying to figure out how this could have happened, then anxiety about the future and ramifications of the diagnosis, then finally some level of acceptance.
Everyone has a different reaction to this type of event, but we can all agree that it is an emotional experience.
Here are 3 things that I have found make the experience a little bit easier:
1. Find A Doctor Who You Actually Want to Work With:
With my past diagnoses I was working with doctors who I already felt had failed me before I even received my diagnosis. The OB/GYN who handled my suspected endometriosis had ignored my symptoms and stuck me on birth control for years. The gastroenterologist who gave me my UC diagnosis had ignored inflammatory markers in my stool test and insisted that I just had IBS for over a year until my symptoms got so bad I called the office begging for a colonoscopy. This time around though I m working with a doctor that I want to be working with. I feel confident that she has my best interest at heart and I agree with her methods. This takes a tremendous amount of the pressure off of me.
2. Be Honest With The People Around You:
If you’re like me and your issues and diagnoses tend to be of a sensitive nature your first inclination is to keep them a secret. I mean who really wants to tell their other 25 year old friends about their colonoscopy and their stool testing? However after years of doing that I finally realized that keeping secrets was only hurting me. When I was feeling ok it was fine, but when I was sick and I needed help no one knew how to help me. Now I am just honest and even though some people may be kind of grossed out when I tell them that I have a tapeworm at least two days later when I don’t feel well from the medicine and I need to stay in bed, they know why.
3. Confront The Diagnosis Head On:
Being in denial or feeling resigned to your fate is another very common coping mechanism, but it isn’t going to do any good. This is how I handled my UC diagnosis initially. I was in my lest semester of college I was engaged, planning a wedding, and the last thing I wanted to deal with was the thought of having a chronic disease. So, I didn’t. I just did what the doctor told me and carried on. The only problem with that was that a year and half later my life came tumbling down when the medicine stopped working and I couldn’t get out of bed. My new husband didn’t know what he had just signed up for and neither did I. We learned and we adjusted, but it was not easy. Sooner or later you will be forced to deal and it is much easier to start earlier.