All too often, doctors or other health-care providers are uneducated about fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS). It's common for us to be told the doctor/provider doesn't "believe in" our illness, that it's all in our heads, that we're just whining about the normal aches and pains of aging, that we're making it up, etc. I haven't personally had a doctor say anything like this to me, but I've heard enough horror stories that I always have a lot of anxiety about seeing a new doctor.
Some doctors will stalwartly refuse to accept your diagnosis, and there's really no way around that. If you can switch doctors, do. If not, try to build your personal credibility with the doctor. Many doctors (even those who understand these conditions) believe we're whiny and emotionally unstable. I recently learned that even some researchers who've dedicated their careers to studying FMS and ME/CFS don't want to deal with us. We need to break down that stereotype.
How can we change their minds? Several ways.
- Treat appointments like job interviews.
- State your problems matter-of-factly and don't tell them a lot of stories about how hard your life is - they can't say you're a whiner if you don't whine, and they won't be as likely to think you have mental/emotional problems. Doctors are trained to evaluate physical symptoms, not to be a shoulder to cry on.
- Dress presentably, not in comfy sweats. They'll be less likely to see you as lazy or slovenly, and they're more likely to regard you as an equal.
- Don't take in fringe theories or information someone posted in a chat room. Your doctor won't regard them as reliable. Instead, show them studies and information from credible sources (About.com, Mayo Clinic, PubMed, UpToDate, online medical encyclopedias, well-known advocacy groups, and mainstream news sources).
- Don't go in expecting problems. If you're defensive in the beginning, you're more likely to get your doctor's defenses up, and that will get things off on the wrong foot.
Even if these things don't help your doctor take FMS or ME/CFS more seriously, they should help him/her take you more seriously, and that can help you get better treatment.
What kind of problems have you faced with doctors or other health-care providers? Have you found things that helped? Share your experiences so we can all learn from them - leave a comment below!
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I think we have to be aware of our body language and posture at the doctor’s office. I recently realized that my “doctor visit mannerisms” are probably contributing to the idea that I’m depressed.
I do have some mild depression, but I want to be sure a doctor understands me and doesn’t focus solely on the depression.
But, what do I do when I go into the doctor’s office? I am obedient, soft-spoken, I usually have a downward or at least non-engaging/non-direct gaze.
Perhaps it’s my German ancestory that taught me that to give someone respect means to engage in submissive behavior – or frankly, I could have learned it from my father who was abused as a child. Wherever it’s coming from, it’s definitely NOT serving me with the current doctor I have. He’s very opinionated, has a very strong personality (my therapist called him a “jerk” but he’s helping me, despite his personality).
But start being aware of your behaviors and try to find ways to make yourself look more engaging. Fibro patients seem to have certain mannerisms… I need to read about “pain behavior” but at least three times, I have been able to identify people in a doctor’s office or physical therapy who I felt had fibromyalgia. Maybe it’s the back pain and the way we sit, or that tired look we have… but I really surprise myself at how I just “know” somehow.
Heather
I ran into a problem I had never had to deal w/when I moved to TX last fall so I had to change pain management doctors. I had asked around in forums I was a member of but had found no referrals, so I was to a point I had to just find one online. BIG MISTAKE. He didn’t like the meds I was on. He treated me like an addict, told me he would put me in rehab but would not continue my meds, all w/n the first 3 minutes. Did not ask why I was on the particular med he had a problem w/or anything. Told me the only way he would continue them was if I was 25 (i’m 57)& still working (i’m on disability). What do you say to a jerk like that when you are caught so off guard? He didn’t know me from Adam’s house cat. But having fibro, arthritis, migraines and osteoporsis, he really made my day.
I can’t say as I would recommend this, but a friend of mine looks people like that straight in the eye and says, “Were you born a “jerk” or is this a work in progress?”
Personally, I would get up and leave right then and there. On my way out I would stop and very politely explain why I was not going to pay for the visit and why I was going to make a complaint to the local licensing board if you plan to do so. You don’t have to be confrontational or rude, simply firm.
I agree with Adrienne, there is no law requiring physicians to be sympathetic, but rudeness is inexcusable. Many of the women I know, regardless of what they have, take a husband or boyfriend with them for first visits. It hasn’t always prevented the abusive behavior, but it has shown men who have never had that problem that physicians really do treat women that way.
Regardless of why you are there, you are a consumer and you don’t have to put up with that level of appalling behavior. You wouldn’t put up with it at the grocery store or a car dealership and you don’t have to take it from a physician.
Heather,
Very good point about mannerisms! I can see how a lot of us could go in fearful of how the doctor will act and also desperate for help, all of which could make us appear submissive and “weak.”
You made me think about my mannerisms, and especially how I always look people right in the eye. That might be something that has helped me avoid the “depression” label and get doctors to take me seriously.
I think I will never get well if I wait for mainstream medicine to catch on.
I only see my ‘modern medicine’ doctor for things that are not fibro related, like if I need something for bronchitis or whatever. I have found though, that the way you dress makes a big difference. Also, I get treated differently whether I put makeup on or not. Strange, but true. I will NOT take anymore anti-depressants. They cause too many side affects that make our symptoms worse! I am now seeing a doctor that has fibromyalgia himself and has been able to get me some real answers. I’ll find out in a few weeks what the results are for the extensive testing we are doing. With this guy, I actually see a light at the end of the tunnel. We’ll see how it goes.
I thought my dr was understanding and identified with the problems I was dealing with, even though all he could do was offer me anti depressents, I did not find out that he had been hummouring me and being patronizing until I got a refferal to a rehmatologist and read my notes. He wrote about me as though I was a neurotic middle aged woman, I can’t say whether I was more angry or upset needless to say I will not be going back to see him again.
At least you got a referal to somewhere useful. after a recent gp apointment I recieved a letter from a local mental health hospital saying that my doctor had asked for an appointment for me and could I phone them to arrange.! bizarre!
I had been to the doctor asking if there was anything else that we could test for as i was about to make the decision to cut my working week, which would affect my family and income quite dramatcally. She hadn’t mentioned any mental health referal, talk about “it’s all in your head!”
Since I just moved to a new state, I’m having to deal with the new doctor thing a lot at the moment.
One thing I want to convey to my new doctors is that I’m proactive in my own treatment. It’s the quality of my life that’s at stake, so I have a vested interest in seeing that I get the best care possible, including playing my part in that process. So I let doctors know what I’m doing/have done for myself.
I’m hoping that this will facilitate minimizing gaps in my care (from leaving my doctors at my old residence), and it will also give me a chance to see how they feel about me taking initiative. At my first appointment with a PCP here, he looked at my list of medicines and supplements and had a question about one of them; I reminded him that I’m a librarian and I try to carefully consider possible side effects and interactions, and look at sources like research journals (PubMed), drugs.com and the like, which he seemed to respect.
Also, I went WAY out of my way to collect and organize all my medical records and I bring them all organized in binders to new doctors, and they usually look for particular things (test results, recent labs, radiology reports, etc.) and make copies for themselves. They also get a list of my former doctors (with brief summaries of what they treated), so they can contact them and request medical records if they want. Having the records with me, though, allows new doctors to right away look at those notes and make recommendations, and eliminates needless delays in my treatment.
My brother thinks I’m just a “Type A” person, but with FM, if I’m not organized like this, I’d just be a mess. For example, yesterday I went to a new urologist and had all these notes already packed in my roller-cart, but I forgot the forms they’d sent me and I’d filled out! I also forgot to include a list of my meds & supplements in my packet for the dr., but I had a pretty recent list in a binder, so at least they could copy that and use it. Despite my messing up, what I had pre-organized saved the day, and I’m being referred to biofeedback in hopes that that will work and I won’t need surgery.
It seems to me that with FM, you practically have to be “Type A” so that when you’re having fibrofog you can still get by with minimal deleterious effects. Type A moments + fibrofog moments = survival.