Guest Post by Julie Ryan - Counting My Spoons
Does your diagnosis piss you off? Do you still have trouble believing or accepting your diagnosis? You aren’t alone.
It’s bad enough when those around us, outside the chronic illness community, or even within it, bash our diagnosis, or refuse to believe we have whatever illness because we aren’t as sick as we should be in their eyes. But, then we do it to ourselves.
I’ve been there…so many times I’ve been there. I feel like life with chronic illness is one big roller coaster of acceptance. You start off not wanting to believe that the diagnosis you’ve been given is the right one. So, you keep searching and continue to get no better answers, so you finally accept things and coast for a while.
Then, you find yourself with a new symptom and BAM! There is it is again. The need for better answers, the need to know is this diagnosis right? The refusal to accept that what you have already been told is correct.
Accepting your diagnosis is difficult. Early on I was one of those who struggled with my diagnosis. Fibromyalgia? There’s got to be something here that shows up on a lab test! I was pissed when I was diagnosed, even though I was the one who brought up 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.
It’s hard accepting a diagnosis that can’t be proven. There were no blood tests, no image tests, no nothing. When I was diagnosed Fibromyalgia was entirely 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.
I’m so happy for those newer to this illness. There actually is a blood test now. Granted you may struggle to get your insurance to pay for it, and having a positive blood test doesn’t change the fact that the treatment options aren’t all that and you’ll wade through the mud trying to figure out how to feel better.
I’m really happy how much things have changed in the 6 years since I was diagnosed. I see a lot less ridicule surrounding Fibromyalgia than I did. 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).
In general it seems that 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 doctor once a year, by mandate of the insurance company, but I see my NP every few months. He listens to what I share, he roots for me, he actually cares.
My mom was never referred to the NP, instead she has the one doctor 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? You aren’t alone.
Just remember that you can’t control what others do, but you can control your reactions. You can also control how you think about yourself and your illness. Learning to accept your illness, whatever it may be, goes a long way to learning to live with it and find ways to improve your life despite it.
It was when I finally stopped fighting that I finally managed to change the way that I think overall. I was able to make huge changes to my lifestyle, to my diet, and to my thoughts. Changes that virtually brought me back to life. I’ll never have the life I had pre-Fibro. That’s something I’ve had to accept. But, I can still have a life. I have accepted my limits and I’ve learned to enjoy life within them. Don’t let anyone fool you…. Even healthy people have limits.
Julie Ryan is a freelance writer and marketer who shares her story on her blog, Counting My Spoons. She has been diagnosed with Fibromyalgia, Endometriosis, Cluster Headaches, thyroid disorder, and migraines… the list goes on. Her goal is to keep living as much as possible despite her illnesses.