Accepting Your Diagnosis

Acceptance is one of the five stages of grief, and it is not the first one. So, it’s not a surprise that it’s a struggle for many of us to accept our diagnosis. If you’re like me, you’ve probably gone rounds with this, at times accepting your diagnosis only to follow it with another round of being unwilling to accept it and continuing to look for a better answer or simply denying it altogether.

Kelly Dempewolfe over at As My Body Attacks Itself  shared a post entitled “No Diagnosis Bashing, Please!” When I began reading her post I thought she was addressing the issue of people bashing someone else’s diagnosis, “your diagnosis isn’t real” or “it could be worse, you could have what I have…”, that type of thing that I know occurs.

The one that pisses me off the most is usually among those with migraines and cluster headaches. The general feeling is that if you can stand up and keep your eyes open you must not REALLY have a migraine. We see the same thing with Fibromyalgia and other chronic pain or chronic fatigue disorders. We see someone who is working full-time and pushing themselves beyond their limits and we are quick to judge them and say that they must not really have Fibro.

But, that wasn’t what Kelly was talking about. What Kelly discussed was people who are bashing their own diagnosis. Both of the examples she used were references to Fibromyalgia. One was a woman who, on Facebook, took serious issue when her doctor gave her the dreaded Fibromyalgia diagnosis, because everyone knows that Fibromyalgia is just a made up disorder that doctors use as a diagnosis to make people feel better. The other example was of a woman who discussed how she felt when she was diagnosed with Fibromyalgia. She didn’t bash the diagnosis but she did say that she didn’t feel it was the correct diagnosis for her, so she kept looking.

The sad part is that as I read these examples I could identify with both; accepting your diagnosis is difficult. Until about five years ago I probably fell somewhere in the middle, and perhaps closer to the first lady.

I was pissed when I was diagnosed, even though I actually asked my doctor about the possibility of Fibromyalgia. It wasn’t that I thought it wasn’t real, I didn’t know much about it, other than that my friend also had it and that it involved chronic pain (which I obviously had) and chronic fatigue (which I was also fighting). However, even though I was the first one to mention the F word, I still wasn’t happy with the diagnosis. I didn’t feel like it “fit” me, and I did question OFTEN if it was real. I still question it sometimes. It’s hard accepting a diagnosis that can’t be proven. There are no blood tests, no image tests, no nothing. Fibromyalgia is a diagnosis of exclusion, and that is the reason it is often referred to as a “trashcan diagnosis” – once you’ve thrown away all the other possible answers Fibromyalgia is what’s left. It’s the only one NOT in the trashcan. I honestly long for the day when researchers finally have a definitive test for Fibromyalgia.

Despite all of that I have to admit that things have gotten much better in the last five years. I see a lot less ridicule surrounding Fibromyalgia than I did five years ago. I see a lot more belief. I am a lot less worried about telling a new doctor that I have Fibromyalgia out of fear that they will dismiss me (and every one of my symptoms). I don’t really have that fear anymore. I feel that, in general, Fibromyalgia is now accepted. Obviously, there are still some both within and outside of the medical community that don’t understand it, or don’t think it’s real. It’s amazing to me the difference in care that my Mom and I get at the same Rheumatology group. We have two different doctors; mine refers to an NP that specializes in Fibromyalgia, hers doesn’t. I see my Dr there once a year, by mandate of the insurance company. My mom was never referred to the NP, instead she has the one Dr in the clinic that doesn’t use him. She was told “you probably have a touch of Fibromyalgia” and “of course you hurt, you are just getting older”. Geez what compassion! What an idiot! So, yes those doctors are still out there, and still treating Fibromyalgia– although I do have to wonder why. It’s not like they don’t have a choice.

So, what about you? Do you ever find yourself bashing your own diagnosis? Do you find yourself questioning whether someone else’s diagnosis is real because they seem to be doing better than you’d expect? Have you ever had someone question your diagnosis when you were having a good day?