I've heard disturbing things about health care from 2 people in my life:
- "When a doctor prescribes you something, do you have to take it?"
- "I don't know if my doctor would approve of my naturopath's treatments, so I'm just not gonna tell him."
Both of these statements came from adults facing serious health issues, and in my mind they both reveal the problems a lot of us have -- not taking charge of our own health.
When it comes right down to it, your body is the only thing you truly own; it was yours at conception, it'll be yours until the end. Our body can't be taken away from us, so why is it that we're willing to hand its care over to someone else?
Let's look at the first troubling statement above. When I first heard it, it conjured up images of doctor-police, coming to your house and counting pills, then hauling you off for not taking your meds as prescribed. This woman was having some unpleasant side effects and really wasn't comfortable with the medication, but she felt that she had to do what the doctor said, and that it was wrong to question the doctor about it. My advice to her was, "Talk to your doctor about the side effects and your concerns, then make the decision for yourself. It's your body."
Now for the second one: it seems quite different from the first, because this person had decided the doctor wasn't doing enough and went to seek another kind of treatment. Wonderful! She was taking charge, right? Well, partially. She made her own decision, but she was afraid her doctor would tell her "no" and she'd have to stop! It's the same underlying attitude -- that the doctor could make her follow (or not follow) a particular course of treatment. In this case, it was a dangerous decision -- the treatment she pursued made her worse, and she likely would have fared better by discussing natural treatments with her doctor so he at least could have guided her.
What we all need to remember is that doctors work for us. We hire them to perform a service, just like we hire a plumber or an investment counselor. They're giving you what's supposed to be an expert opinion, but if you disagree with them you have every right to say so. Also, if we keep secrets from our doctors, we're taking away their ability to treat us to the best of their abilities.
I'm not saying doctors are blameless in this -- they can be very intimidating and insistent, using words like "non-compliant," labeling you "difficult," and even refusing to treat you. However, a doctor who is truly interested in giving quality care to human beings (and not just body parts) should be willing to collaborate with you on the decisions that impact your health.
Here's some information on finding a good doctor and establishing a positive relationship:
- Find a Fibromyalgia Doctor
- Find a Chronic Fatigue Syndrome Doctor
- Get More From Your Doctor's Appointments
- Improve Your Relationship With Your Doctor
- Why Doctors Complaints About Us
Have you faced doctors who made it hard for you to make your own decisions? Have you been "fired" by them, or left them to find someone better? Does your doctor work with you or try to dictate to you? Share you experiences by leaving a comment below!
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I thought this was a brilliant post and sums up what I’m trying to do with my own website, http://www.lifeofachiro.com. We’re living in a society that has over-bearing doctors and patients that are passive about their health. It’s my goal to help bridge this gap between all aspects of medicine and help educate the public to the best of my knowledge.
So thank you for the article and help bringing this aspect of health to light.
Most of the people I know, myself included, with chronic illness have these problems with their doctors. The doctors don’t want to listen to us. They don’t want us to make appointments because we don’t fit into their list of things they can prescribe drugs for. They don’t take it upon themselves to find out more about our illnesses and they don’t want to face the fact that we know more about our disease than they do. It is all well and good to tell us to find a better doctor, but there are more sick people out here than ‘good’ doctors can take on. We are intimidated into playing the good patient and just doing what the doctor tells us because we have no other option, and we are afraid the doctor will refuse to help us if we don’t follow his advice. We are angry and frustrated that the doctor won’t listen to us and the latest research. I can’t tell you how many times I have come back from doctors appointments weeping, hopeless. I can’t tell you how often I’ve had to raise my voice to get my doctor to listen. The problem is the doctors, their lack of training and knowledge about these illnesses, their arrogance & refusal to accept that they need more knowledge, and that patients are a good source of knowledge. There is an IMMENSE shortage of doctors on this planet who have any of these qualities. The ones that do are overbooked and not accepting new patients. What can we, as patients, possibly do about that?
perpetualspiral,
That’s exactly why we need to take charge of things — because most of us can’t rely on our doctors. We need to do our own research and make our own decisions, not follow our doctors blindly or wait for them to come up with solutions. If a doctor believes my supplements and acupuncture are worthless, I don’t have to change his mind and I don’t have to take his advice — I know they work, so I really don’t care what he says. However, I want him to know what I’m taking in case they pose a danger I’m unaware of, and so my medical record is accurate in case of an emergency. It’s not about finding a great doctor, it’s about not blindly following a doctor against your own best judgement.
I completely support the concept of FM/CFS patients being their own advocates; in fact, I think it’s the best chance of each of us getting well if we truly take ownership of our own bodies. Relative to “full disclosure” of all things I’m doing to support my health, I have been known to intentionally not disclose certain items, especially if they involve natural medicine (i.e., taking supplements) when I already know that a doctor is “close-minded” or un-enlightened about such things. I figure that we will never see eye-to-eye on these things, so why put myself through the unpleasantness of being ridiculed by a doctor who is uninformed or misinformed, or simply not educated enough about my illness? Sad to say, but true, that I sometimes find myself in a position where I know more than my doctor does. The solution is obviously to find a better educated doctor with regard to my issues, but unfortunately, I don’t think there is enough of them to go around.
But what about doctors that won’t co-operate? I’m not talking about supplements, I’m talking about running tests, prescribing medications, referring us to specialists. My doctor has actually refused to do these things for me. He has actually said the words “I can’t help you” and then when I asked to be referred to someone else he said “Why are THEY going to do for you?”. Yes, I’m considering registering a complaint. But the fact is, I’m dependent on him for the medications he will actually prescribe. Where I live, people can’t find a GP – there aren’t enough, nobody’s taking new patients. I know I’m not the only one in this situation. I go to my doctor with research, with facts, and he shakes his head at me and tells me I just have to exercise and lose weight (he’s as overweight as I am!). I’m sorry I’m taking my frustrations out in your comments, Adrienne, I really am! But there are so many of us who are really trying to be proactive when it comes to our health, only to have doors slammed in our faces by our doctors. I just don’t know what to do!
perpetualspiral,
If I were you, I would register a complaint. Also, tell him you want to see a specialist and won’t take no for an answer. Tell him straight out — “You can’t help me, so let’s see if someone else can.” If he still refuses, complain to everyone you can, from his employer to the AMA. It sounds like he needs a good reminder that you’re the one paying him!
Believe me, I understand the frustration. I’ve been around and around with some doctors and gotten nowhere, and sometimes I’ve just had to keep pushing for what I wanted until they gave it to me just so they didn’t have to deal with me pushing anymore. In my experience, it helps to have someone else with you who’s willing to push. Sometimes, a doctor doesn’t see us as credible, but they’ll give more credence to someone else.
I wish I could help you more, but all I can say is keeping pushing.
Had SO many doctors tell me that I’m just depressed. At one point, I started to believe it and I DID get depressed from questioning myself.
Then, got my fibro diagnosis. I ran into a rheumy who said he believed I had fibro, but he was pushing me to take anti-depressants (not just for sleep or pain management — he was trying to take me off my trazodone which helps my sleep and put me on Effexor, Cymbalta, an SSRI…) I tried Cymbalta, had a bad reaction (felt like a mini-stroke)! He got really unpleasant with the therapist that I chose after he insisted I see one. He told her, then, that I should “admit” that I was depressed. She said he seemed to believe I’d have a major epiphany if I admitted to being depressed, but she said she didn’t think that was going to happen.
Truth is, I didn’t feel it was wise to admit to depression, even if the illness does cause me some. I know ME better than any doctor knows ME. I know where the depression comes from and I know I’m actively combating it, and successfully. If he wouldn’t have pushed it down my throat, he and I might have made progress, but as it is, I won’t be seeing him again.
My new rheumatologist seems to “get it.” I’ve even been open about the depression and nothing has been shoved down my throat. He offered something, I was assertive and refused. I sensed that he respected and understood me.
I think most of us have some sort of experience with these types of Doctors. Sometimes they try to push the new medications on you and those are expensive as well as no long term side effects are known. One doctor I had labeled me as “having financial trouble”, just because I didn’t want the more expensive medicine.
I have a new Doctor now that I am trying to establish a relationship with, but I have yet to hear her even say the word fibromyalgia. Again, like one of the other readers responded-they do write prescriptions that we need, so in a sense, we are stuck. Plus, not enough doctors around.
Yes, you can complain, but it is hard to get a Doctor to change their ways. One of the most important things I need from a Doctor is a good bed-side manner. That shows mutual respect on both sides (patient/Doctor). I know there are some out there, but finding them is what’s hard.
I am so glad to see these words in print. When I first met my primary care physician, I brought a “contract” with me that I had found online. It basically said that we would be partners in taking care of me and my body. She smiled and agreed and we’ve never butt heads in the years I’ve seen her.
My rheumatologist, on the other hand, just barks orders and never explains them. And I usually don’t take her advice. Or if I do, I change back sometime later. I’ve tried bringing in some research from the Internet, but she doesn’t read it and we don’t discuss it. I see her usually once or twice a year because I need a link to someone who believes fibromyalgia exists.