5 "Do's" for a Better Relationship with a Fibromyalgia/ME/CFS Doctor


Why is It So Hard?

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When you have fibromyalgia or chronic fatigue syndrome, it's important to work closely with your doctor(s) to find the treatment regimen that works for you. Sadly, a lot of us struggle to build good relationships with our doctors.

Why is that? It could be that the doctor doesn't "believe" these conditions are real or doesn't know enough about them to treat you. It could also be that you've had bad experiences and go into appointments expecting problems.

While you can only take responsibility for 50% of that relationship, if you can be a better patient, it may enable your doctor to be better, as well.

That doesn't mean always agreeing with the doctor and doing exactly what he/she says. Rather, it's a way of approaching your appointments and the relationship itself. The 5 Do's in this article can help you have more productive appointments so you can work toward a good doctor-patient relationship and, most importantly, more effective treatments.


1. Do be Prepared

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Doctor's appointments are often short – 15 minutes or even less. This often isn't your doctor's fault but is dictated by administrator or is an attempt to meet high demand. It's important to make the most of the time you have.

Think about a few things before you go to an appointment. Have any symptoms been getting significantly better or worse? Have you changed anything about your treatment regimen? Have diet or lifestyle changes impacted your health? Are your medications causing any new side effects? Is there a treatment you'd like to try? Those are all things your doctor needs to know.

Also think about what questions you may have. Since we're not exactly known for having great memories, make a list and put it in your purse or wallet. That way, you're not kicking yourself on the way home because you forgot everything you wanted to ask.

Being prepared will show your doctor that you're holding up your end of the relationship and, hopefully, will help the appointment meet your needs.


2. Do be Direct

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It's normal to be a little intimidated by the diplomas on the wall and the white coat. Don't let that make you too timid to say what you need to. Beating around the bush about your symptoms is likely to waste precious time and possibly try your doctor's patience.

Even if the symptom is embarrassing, try to talk about it in a direct, professional manner. Sometimes, using a clinical term for it can help – it's easier to talk about stools than poop, for example.

This is important when asking about something your doctor may object to, such as a complementary or alternative treatment. Remember that, in the end, treatment decisions are yours to make. So instead of sheepishly saying you're maybe kind of a little interested in acupuncture or homeopathy, just ask what your doctor thinks of them. You're not asking for permission – you're looking for information and an educated opinion.

(If you decide to go against your doctor's advice, still be sure that you're honest about it! Otherwise, you could end up doing more harm than good.)


3. Do Educate Yourself (the Right Way!)

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In the medical community, the term "Googler" is often used in a derogatory way to describe patients who do a search for their symptoms and think they're suddenly an expert. You don't want to be one of those patients, but you do want to be educated.

First, you want to rely on reputable websites for your medical information. Before reading what a site has to say, look at who is saying it and ask what they have to gain. Is it a site that sells supplements? Is it a chiropractic site looking for patients? Or is it a site that exists to give you helpful information?

As you read, pay attention to whether they're talking about studies or just anecdotal information. If they seem to be relying on medical research, do they link to it or provide a source list at the end, so you can see the evidence for yourself?

Some reputable websites include:

Learn some basic terminology about your illness so you can be specific about your symptoms and understand how treatments work. You can get started with that here:


4. Do be Realistic

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Doctors are human. The body is complicated. Fibromyalgia and chronic fatigue syndrome are challenging to treat. A mountain of medical research is published every month. Keeping these realities in mind can help you manage your expectations of your doctor.

Expect false starts when it comes to treatments. Each of us responds different to drugs, supplements, etc., and your doctor can't know what will work for you right out of the gate. Finding successful treatments takes time and experimentation.

Don't expect your doctor to know about every study ever done on your condition, unless you're lucky enough to see a micro-specialist. There's simply too much coming out all the time.

If you see a study you believe is relevant to your condition or treatment, mention it or take in printed material, but don't expect your doctor to drop everything, read it, and act on it. Medical studies are long, tedious, and often need to be replicated before the results are useful in the real world.

Eliminating false expectations can help you deal better with the limitations your doctor faces and free you up to focus on what can be accomplished during your appointments.


5. Do Have Good Self-Efficacy

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Self-efficacy is how good you are at doing the things that help you feel better. It's not the same as "compliance," which is doing what your doctor told you. I don't like the word compliance – it suggests that I'm a passive participant in the treatment process, simply doing what I'm told.

I'd much rather have good self-efficacy by taking the medications that work as they're prescribed as well as managing my diet, activity level, stress, and lifestyle in ways that I've determined are beneficial. That puts me at the center of my health care, which is where I need to be.

However, even I have to admit that compliance is part of self-efficacy. If you don't take your medication as directed, you won't know how well it works. If you don't try the things your doctor suggests, you can't make informed decisions about whether to adopt or discard them.

Also, most doctors don't expect you to be compliant if you should start having negative side effects from what they recommend, be it prescription drugs or dietary changes. The heart of their oath is "do no harm," after all.

So while I prefer the term self-efficacy to compliant, in the short term, we need compliance in order to make the best decisions.

(Of course, there's an extreme exception, if you have a doctor who ignores your prior experience with something that was harmful and wants you to try it again. That situation calls for respectfully agreeing to disagree.)

Really, though, the doctor can only give advice. If we don't follow it, we can't expect any benefits.


Mutual Respect, Common Goals

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When it comes down to it, doctor-patient relationships are like any other. To be successful, they need to be based on mutual respect and common goals. In this case, the goal is making you feel better.

If you don't believe your doctor respects you or shares the goal of improving your health, it may be time to, if at all possible, find someone new. These articles can help:

For more help, see:

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