The way people in the medical field treat people with Fibromyalgia astounds me.
This is not a new thing by any means. I am not the only one who has faced prejudice about illness because of my age, and because many "professionals" do not have accurate information regarding Fibro. Yesterday I had to go see a Rheumatologist because I was referred from my primary nurse, and it is necessary for my pending SSI/Medicaid case.
I didn't have high hopes even though this doctor supposedly specializes in Fibro and Osteoarthritis (which I have). Whenever I have an appointment with a new doctor the anxiety and dread amps up, even when I am not consciously thinking about it. After being to dozens of doctors and being treated like an insane person over and over, getting discouraged and crying my eyeballs out, I finally decided awhile back that I do not give one fig about what these people say to me, unless it is beneficial and edifying. The trouble with having this illness is that it is so not understood by the powers that be. Much in the way that other illnesses were treated with contempt before they were understood (MS, depression, bi-polar,etc.) so is Fibromyalgia. The truth is that we, the patients, have to search high and low for concrete answers and we honestly do not have one solidifying one. Instead we have various possibilities and contributors and hundreds of skeptics. It's madness.
Case in point, I go to this appointment, wait 45-60 minutes, and as soon as the doctor comes in she asks what she can do for me. I start talking, she cuts me off repeatedly, thwarts every question I have about diet, exercise, pain medication, my current regime, weight gain... She basically told me she can't do anything for me, that I am too young to have Osteoarthritis (to which I replied, "how do you think I felt at 29 years old being told I have the back of a 65 year old woman and that I couldn't continue in my current profession?"). She grilled me about how I received the diagnosis, patronized me when I told her it took me a few years to get to a functional place, where I can exercise again and have a semi-normal existence. I told her I am looking for a doctor who believes in me and who will work with me to manage this disease. She asked, "the important thing is do you believe in yourself?" Well no freaking duh lady! But you are the one with the prescription pad and the authority for my Medicaid case. Anyway...
So she is in the room for all about 5 minutes. No exam, no looking through my medical paperwork at all. She tells me to come back in 6 months. I stopped her, and said I wasn't trying to be snarky, but what was the point of coming to see her, paying out of pocket when she didn't do anything? She said there was nothing she could do.
REALLY?!
A Rheumatologist who specializes in Fibro can do nothing for a Fibro patient?
She made a half-hearted attempt to press my tender points. Looked disinterestedly through my paperwork. She said she doesn't deal with viral infections, would not test me for autoimmune issues because she didn't think I had Lupus. I explained family history of Lupus and MS, my own positive and negative autoimmune results. Asked her if she could check my ear because I get frequent earaches and a lump on my neck that lives there. She told me I had to have my primary check those things out.
Excuse me, but what the hell is a specialist for? Especially paying out of pocket????
I left, got in the car, and cried. Not in self-pity, not in depression, but in anger. For myself, and for all of those out there dealing with any illness who are dismissed by medical professionals. I can guarantee if I were a damn Kardashian I could probably get an MRI for a hurt pinky, with a prescription for unlimited pain killers. Money rules. Going to appointments like this reminds me of how it used to be... when my body was falling apart bit by bit, and there were NO answers at all. When I would bleed and ache and fight to make it through each day, and no one would help me or take me seriously. Sure, now I can ride my bike 5 times a week, I can go to a movie, or chat on the phone a bit... but oh, what it took to get here.
This is not the first time I have had to deal with someone being rude to me because I am young and because I have an illness that astounds them. Honestly, I think a lot of it has to do with their own pride. If they can't fix us they don't want to deal with us. It's so infuriating! Rheumatologists are starting to deny Fibro patients because it is seeming to be Neurological in origin, yet Neurologists are not yet taking us on, so we are just floating in the abyss of sickness.
It makes me utterly grateful that I was able to go to the Fibro clinic in California. If I hadn't researched on my own online, I never would have known that was an option and I wouldn't have gotten all those blood tests done, revealing the viral infections and other hidden issues contributing to the Fibromyalgia. I never would have gotten started on supplements, and I would still be in the dark.
I feel grateful that I know which medications to take for my particular Fibro cocktail. I am glad to have carved out a functional lifestyle, albeit extremely limited, after scrambling around like mad for years, driving myself into the ground. It took a long time and extreme effort to climb out of depression and into acceptance! But it is not enough for me to be "managed." What about my friends who are treated like loony bins? What about those who do not have access to free health care? What about those of us who are still treated like we are crazy, like Fibro is all in our heads?
I pray for the day when we will be taken seriously. When people stop saying all we need is exercise and a good diet. When doctors HAVE to believe us. When our age is no longer a reason we are discriminated against.
When I was getting treatment at the Fibro clinic my doctor told me, "You are not crazy. This is NOT in your head. You have a real disease and it will take some hard work and a lot of time to get it managed."
Managed, not cured.
There is no cure as of yet.
But we can learn to live with it.
I'd like to remind you that you are not crazy. You have a disease. It is not in your head. You are not alone.
Out of the dozens of doctors I have seen, there are probably only about 3-4 that have taken the time to get to know me and who have taken the time to help me.
It's a shame that most doctors are unqualified for their jobs.
