I’ve had Crohn’s disease for nearly 20 years, so while my diagnosis story is a bit dramatic, it all happened so long ago that the edges of the memories have faded a bit. When I was diagnosed, I didn’t know what Crohn’s was. I had literally only known one person who had it and I didn’t understand what it meant. I’m not sure I even knew what area(s) of the body Crohn’s affected.
Even then, it was an established diagnosis, recognized by the medical profession. Safe and effective treatment options were limited in the 90s. It was not widely understood by lay people and I got confused looks whenever I told anyone the name of my illness. People often made comments that led me to feel like I was sick through some fault of my own – either an improper diet, emotional problems, not diligent enough about treatment, a lack of religious devotion, or on the flip side – that I was being given this illness to suffer as a “gift” from God. As a result, I was under attack by stress, uncertainty and a well-placed feelings of being alone and misunderstood. Some of these things have gotten better with time, and efforts to increase funding for research and awareness campaigns.
At my last appointment with the gastroenterologist, based on symptoms I described, the nurse practitioner suggested that I might have either Fibromyalgia and/or Chronic Fatigue Syndrome. I’ve spent the last few weeks experiencing the challenges that come with confirming an invisible illness.
The challenges are logistical: my primary care doctor would see me to discuss these issues, but I had to wait three weeks to get an agreeable appointment time. My appointment was later cancelled due to unknown reasons on the part of the doctor. In the end, I waited 5 weeks to see my primary care physician.
Meanwhile, I tried to get an appointment with a Rheumatologist. There are only two local Rheumatology practices. One came highly recommended by friends. The other told me they did not “treat or diagnose” Fibromyalgia. Alrighty then…
The challenges are emotional: The reality is that Fibromyalgia is a less accepted medical diagnosis in 2013 than Crohn’s disease was in the 90s. 50% of Rheumatologists in my area don’t believe Fibro is real enough to treat or diagnose. There is no definitive test for Fibromyalgia. The diagnosis itself is still controversial and the cause is unknown. The symptoms can come and go, inflicting disruptive pain one day and leaving the patient alone the next. How do you get friends and family to take you seriously if medical professionals don’t? What if my symptoms are really just all in my head, not that bad, or side-effects of the natural aging process?
I’m in the early stages of trying to confirm and treat this new diagnosis. It is all at once interesting and terrifying and exhausting to go through the long process of discovery to hopefully find the combination of treatments that will offer some relief from pain and extreme fatigue.