I think, in society, it's become commonplace to treat Doctors as if they are God. Some doctors seem to believe that they are. Yes, doctors frequently save lives, they treat illness, they heal people.
But doctors are human. And it's impossible for a human to know it all and be it all. (Trust me, I've tried.) Yes, Doctors attend school for years to learn their craft, but medicine is fluid and changes. Anyone watching television can see the ads for all of the new medicines that are making their way out into the public. New advances in medicine happen regularly. But just as new advances in medicine come about, so do new diagnosis and new conditions.
I remember looking back to just before I was diagnosed. I was 15, and like many 15 year olds had mood swings. I was depressed and anxious, but really, who isn't at that age? But I was also always in constant pain.
So, my primary care suggested a counselor, for the depression, because all of the tests came back "normal". And the counselor referred me back to another doctor for the pain. That doctor referred me to another counselor for the depression because the tests were all "normal". And so on and so forth. I was fortunate enough to finally be sent to a rheumatologist who had heard about Fibromyalgia. I still remember being told that they were only really seeing it in women in their 40's and 50's at that point, and many doctors didn't acknowledge it as an illness because there wasn't a test for it.
One would think, given the amount of time that's passed since then, that the medical profession would have accepted Fibromyalgia as much of a problem as any other condition. Ah, yes. One would think.
Over the last 17 or so years, I've received a range of responses from medical professionals:
From a rheumatologist: "You're just emotional and need a psychiatrist." Um, doc? I'm crying like this because I haven't slept in months and I hurt, and would you mind addressing me rather than playing with your computer?
From another rheumatologist (about 2 years ago): "You just need sleep and exercise." Hey, if I could sleep and/or exercise, I wouldn't be coming to see you.
From an HMO: "We don't treat Fibromyalgia or any of the 'complications' that accompany it because it's not a real diagnosis." Right. OK. So, the pain, fatigue, digestive stuff, cognitive stuff, and hypoglycemia won't be treated because the underlying condition isn't "real." Sounds like a great way to save some money, folks.
From a ER Doc at a recent ER visit: "You don't feel pain normally because of the Fibromyalgia. So, the kidney pain just feels this bad because you don't feel pain as a normal person would." Had I not been completely hopped up on opiates and screaming in pain at the time, I would have been completely offended by the statement that I wasn't normal (which I am offended by). Guess what, Doc? You'd probably be screaming in pain too if you felt like you had someone pulling out your kidney through your ureter using an ice pick.
The medical profession seems so disjointed about the condition, it's really no wonder that the general public doesn't understand.
I learned a long time ago from watching my mom work with her doctors that while they had the book knowledge, I was the expert about my body. I know what medications I've been on...and I know the side effects. I know which meds I can't use, and which work well for me. I know what I experience on a daily basis. There is not a cure all solution.
I'm fortunate to work with a doctor now who works with me rather than trying to tell me what to do. But I've also had to fire a lot of docs. I am not my diagnosis, but I am a person who lives with a condition that presents a huge number of challenges. I accepted a long time ago that I was never going to be a "normal", but that doesn't mean that I have to live my life abnormally. I don't have to lie down and hide, and maybe the fact that I'm not meek or that I'll go overexert myself and screw up a knee frustrates my medical team. Oh, well. I never said I was going to be easy to work with. I also never said that I was going to let the Fibromyalgia rule my life.
Like I said, I have a condition that presents a huge number of challenges, but fortunately for me, I've always liked a good challenge.