5 "Don'ts" for a Better Relationship with a Fibromyalgia/ME/CFS Doctor

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Why the Relationship is Difficult

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Getting a diagnosis of exclusion can mean spending a lot of time with your doctor. Eric Audras/Getty Images

A good relationship with your doctor can be a huge benefit when you have fibromyalgia or chronic fatigue syndrome. It can help you learn more, be more satisfied, and – most importantly – find better treatments.

At the same time, it can be especially difficult for those of us with these conditions to forge those relationships. Several things play into that:

  • Many doctors still don't "believe" in these illnesses;
  • Others believe but don't know much about them;
  • They may have little faith in their ability to treat us;
  • They may come in with pre-conceived notions of us as patients;
  • We may have little faith in their ability to treat us;
  • We may go in with pre-conceived notions about them;
  • We may be looking for the wrong qualities in a doctor;
  • We may have unrealistic expectations about appointments.

Following these 5 Don'ts, you may be able to build or repair your relationship with your doctor or doctors.

One caveat: As with any group of people, you'll find good ones and bad ones. Some doctors won't ever be a good fit for someone with fibromyalgia or chronic fatigue syndrome. If they don't respect you as a person and take your symptoms seriously, you should, if at all possible, find someone else to treat you.

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1. Don't Whine!

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Whining is rarely an attractive quality. It's obnoxious enough in a toddler, but likely even more annoying in an adult.

Sometimes, when you're in pain or exhausted, whining happens. However, it could make your doctor take you less seriously. You can hardly blame them – their goal is to hear your concerns, address them as well as possible, and move on to the next patient.

If you have an "I really need to whine" moment, talk to a friend, or find a good online forum or Facebook group full of people who understand what you're going through. Don't take your worst moments to the doctor's office.

I've seen surveys that say some doctors dread treating us because we're an especially whiny bunch. Surprise the next one you see by being straight forward and dealing with fact rather than emotion.

There are times when you might break down in tears at a medical appointment because you're scared about your health, your diagnosis, or the lack of a diagnosis. That's a different situation and a good doctor should understand. This isn't the kind of thing I'm talking about here.

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2. Don't be Defensive

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Many of us have had doctors who've dismissed our symptoms, our diagnosis, and us as human beings. Maybe you've been accused of lying, malingering, or drug seeking. Those are bad experiences and you shouldn't have been subjected to them. If you've had several, they can lead you to feel like the entire medical community is against you.

However, if you let yourself be openly defensive and resentful, you won't win any points with the next doctor you see. Try as hard as you can to go in with a clean slate and give the human being trying to treat you a chance to prove that they're better than the schmuck who sent you away in tears.

Even if you've clashed with the doctor you're seeing before, do what you can to set a more positive tone going forward. It just might improve your relationship. (If not, I hope you can find someone better soon!)

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3. Don't Make Assumptions

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Have you heard the same old advice about exercising more from every doctor you've seen? Or maybe the long-time favorite "you're just depressed"?

Yes, it's beyond frustrating to hear those things from doctor after doctor, but just because the last five have said it doesn't mean the next one will. Again, wipe that slate clean and don't assume you know everything that will come out of a doctor's mouth.

While that's how I try to approach a new situation, I do go in armed with rebuttals, just in case. However, I don't wear them on my sleeve. It goes back to having a good attitude and not pre-judging the doctor. After all, you don't want the doctor to pre-judge you!

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4. Don't Lie!

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A lot of people lie to their doctors about whether they've followed recommendations or what non-traditional treatments they may be trying. That's not only a hindrance to getting the best medical care, it can be downright dangerous.

So admit that you didn't exercise more and explain why. Admit it when you're not great about taking your medicine. All of that is information the doctor can use to better tailor a treatment regimen to you.

For instance, if your doctor knows you often forget to take a second dosage of a medication, he may be able to prescribe a controlled-release version you only take once a day.

In some cases, a lie can lead to a dangerous situation.

I know a woman with a potentially deadly disease who didn't think her medication was working well enough, so she went off of it and started seeing a naturopath. He put her on lots of supplements and a special diet. But she didn't tell her doctor because she was afraid he wouldn't "let" her try an alternative approach.

True, some doctors are dismissive of complementary and alternative treatments, which can make it uncomfortable when you want to try one. But here's the thing: doctors can tell you they don't  agree with what you're doing, but they can't prohibit you from doing it. It's your body and your choice. Even so, they need to know what you're doing so they can steer you away from things that could be dangerous.

When the woman I mentioned went back to her doctor, he was horrified by her lab results -- her disease had advanced significantly. She finally told him about the naturopath's regimen and he explained to her why those things were not only unhelpful, but harmful. She wished she'd had that conversation several months earlier, before the damage was done.

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5. Don't Look for Sympathy

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I hear it all the time: "my doctor isn't compassionate." My response? "That's not what your doctor is for."

Sure, it would be wonderful to have someone empathize with how hard it is to live with these illnesses; to have a shoulder to cry on and a sympathetic ear; to leave feeling like you have unloaded all of your troubles.

The thing is, the word for someone who provides those things isn't "physician." It could be a friend or family member, someone from your support group, or your minister, but it's not your primary care provider, rheumatologist, or other medical specialist.

Again, those doctors are there to figure out what's going on in your body and do their best to treat it. Period. Instead of looking for someone who will sympathize, look for someone who will listen.

I've been to a neurologist who comes off as cold and borderline mechanical. He doesn't dwell on anything I say but rather fires off question after question. He does odd little tests of my coordination without explaining much about them.

But you know what? Once he's done with all that and tells me what course of action he wants to take, I can tell that he's absorbed all of the information I've given him. That's what leads to diagnosis and treatment.

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It's About Mutual Respect

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In the end, it's about treating your doctors with respect, which is exactly what you want from them. Examine your own behavior before assuming that all the problems lie with the doctor. In the end, though, if you're giving respect and not getting it in return, it's time to find someone new.

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