Fibromyalgia Awareness Day was May 12

Hey, I missed it! Apparently, National Fibromyalgia Awareness Day was May 12, and I had no idea (because I was in Grading Jail). So, now that I've turned in my grades, I have declared today my own personal fibromyalgia awareness day.

The National Fibromyalgia Assosciation was founded by people like me, who had bounced from doctor to doctor, trying to find an explanation for painful and debilitating symptoms, without success. Things are different now, but most folks I know still don't have a clear understanding of the condition. I have been reluctant to talk in depth about it to most people I know, because quite often they respond with discomfort; either they think I'm whining, or they feel compelled to tell me to "do something" and are irritated with me when I don't do it, or they simply aren't interested. This means that there are times when I need things, and I don't get my needs met because I don't ask. I need to work on this, because it's getting in my way, especially at work.

Some folks whose blogs I read on a regular basis talk about living with cancer or multiple sclerosis at various stages of diagnosis and treatment. They have spoken honestly and painfully about their experiences with doctors and hospitals, with treatments which are sometimes more painful and difficult than the illness, about their fears and anger, about what helps and doesn't help in their interactions with well-intentioned or not so well-intentioned "helpers." Many of the folks who comment relate their own stories, most of us try to send good wishes, good vibes, and sometimes presents or money to help out, but many times, the most important thing we do is listen and say something like "yeah, I hear you, this is hard."

I don't have cancer, and although I've had some scary moments after mammograms when I've been called back for second images, I haven't had to face that life-altering moment of a diagnosis with a life-threatening disease. But I do have a chronic illnesses, and I have had to deal with the search for a diagnosis, my own denial about how these diseases have changed my life. I have to manage the symptoms, the confusion and anger that can come when I need help but am unable or afraid to ask for it. I have also had to give up on the idea that I will be able to do the kind of work that my job requires for "success." This last part has been especially hard for me, because my job constantly requires evaluation, competition, and I know many folks who do the kind of work I do in much more difficult situations. It is a challenge to see my situation for what it is, without invidious comparisons that distort my self-image.

Something I can do for myself today: bookmark some FM sites on this blog, spend some time reading up on the latest research at National Fibromyalgio Research Association site, take a walk around the lake, eat well, drink lots of water.

I went to the web page of my health provider and did a search for the word "fibromyalgia" and come up with this: "No results found for fibromyalgia." This is bizarre, as my doctor has been treating many patients with FM for years. But a patient looking to find a doctor with some knowledge of FM has no way of knowing that.
Maybe I need to do some raising of awareness with them?