Dawn Marcus, MD, is a neurologist and professor at the University of Pittsburgh, where she has focused her career on holistic chronic pain management, with a special interest in fibromyalgia, migraines, and women’s health issues. Dr. Marcus has written over 15 books, including The Woman’s Fibromyalgia Toolkit: Manage Your Symptoms and Take Control of Your Life , a comprehensive guide to understanding what fibromyalgia is, what causes it, how to treat the symptoms, and strategies for effectively communicating with healthcare providers. You can follow her work through her blog at www.DawnMarcusMD.com.
The following is an excerpt* from The Woman’s Fibromyalgia Toolkit: Manage Your Symptoms and Take Control of Your Life , by Dawn A. Marcus, MD, and Atul Deodhar, MD.
Talking to Your Doctor About Fibromyalgia
People with fibromyalgia have two problems that can make a conversation with their physicians difficult: first, most doctor visits are short; and second, your doctor may not understand how disabling fibromyalgia can be. Organizing the time you have with your doctor and helping him by prioritizing the issues you want to discuss during each visit can make your time together more productive. If you feel as if your doctor is rushing you through your appointment and out the door, you’re not alone. The average doctor’s visit now lasts only about 20 minutes. While this may be enough time to review how to manage blood pressure, it’s probably too short to handle several health issues adequately. If you try to talk about pain, poor sleep, and bowel issues, your doctor will probably become a bit uncomfortable, knowing there’s not enough time to cover everything. It’s not just the American system that’s to blame—the average doctor visit in Europe lasts 10 minutes, and in Japan, only 6 minutes.
Do most physicians consider fibromyalgia a significant medical condition? When you try to talk to your doctor about your symptoms, do you get the sense that he’s really not listening and would rather hear about something else? This reaction is not just because of you—and unfortunately it’s not unique to your doctor. In a recent study, doctors were asked to rank the status they gave to 38 common medical conditions, including fibromyalgia, based on the standing they believed that each held among doctors. The health issues awarded the highest status included myocardial infarction, leukemia, spleen rupture, brain tumor, pulmonary embolism, testicular cancer, and angina. Fibromyalgia was last on the list of 38. So, you may be right if you think your doctor does not understand that fibromyalgia is important. As a person who has the disease, you are an important resource in helping to educate your doctor about the significant impact that fibromyalgia can have. If she is not comfortable managing your fibromyalgia, look for someone who is.
BE AN EFFECTIVE COMMUNICATOR
You probably can’t make your visit last longer, but you can use your time effectively. Become an effective communicator to help inform and educate your doctor about the importance of fibromyalgia and your symptoms. Become your own best advocate: Make sure that your concerns are heard, your needs are being addressed, and you understand the recommended treatments. In most cases, your doctor will be a good resource for managing your fibromyalgia. In some cases, you may need to ask for a referral to a specialist. Most doctors are open to getting a second opinion. Seeing another physician is not a sign of failure for you or your doctor. If he suggests that you should see someone else, you shouldn’t feel abandoned or think he won’t treat your other health problems. Fibromyalgia can be frustrating for patients and their doctors. Sometimes your doctor may seem disinterested when, in fact, he has run out of ideas. This is a great time for a fresh look. The communication techniques described in this chapter can be helpful for sharing information with your doctor and talking about where to turn when you hit a stumbling block.
Develop Good Communication Skills
The 18th century theologian, philosopher, and scientist Joseph Priestley is credited with having said, “The more elaborate our means of communication, the less we communicate.” In today’s age of smartphones, teleconferencing, electronic media, and the Internet, this statement seems quite modern. Despite all the communication tools available, we still have trouble during conversations with our health care providers. The good news is that you can improve communications with your health care provider—even if she is a poor communicator. By using effective communication strategies yourself, you can vastly improve the exchange of information during your typical doctor visits. Plus, when you use effective communication strategies, it actually teaches your health care provider how to communicate more effectively with you and her other patients.
Make a Written List
It’s easy to get sidetracked or feel rushed during appointments and forget to share important information or ask key questions. Lists are terrific memory aides. As you prepare for a doctor visit, make a list of the information you want to share—your most troublesome symptoms, any medications and other treatments you have tried and those you’re still using, and any other key concerns. Be sure to include non-prescription medications and supplements in your list of medications, and note the dose for each. Also, include a list of questions that need to be answered and concerns you want addressed.
Prioritize Your Symptoms—Be Prepared
Franklin Delano Roosevelt perhaps said it best: “Be sincere; be brief; be seated.” When you have a complicated problem such as fibromyalgia, with lots of bothersome symptoms, you would need several hours to completely address all of your concerns. Unfortunately, you’ll probably only have the usual 20 minutes, so use this time wisely and get your most important questions answered first. If you really want complete and thoughtful answers from your doctors, start your conversations with this statement: “There are three things I’d like to talk to you about today.”
Don’t expect to get everything addressed during one visit. Before your visit, decide what your three most pressing concerns are, and limit yourself to asking questions about them. Once your doctor knows that you only want to discuss three issues, you’ll probably get more informative answers. Save less pressing questions for a later visit.
Ask Direct Questions and Say What You Mean
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If you want to get a clear answer, ask a direct question. When men listen to women talking, they often conclude that women spend a lot of time talking around issues, hoping to gently lead listeners to a question, rather than just blurting it out. Men often ask, “Why can’t women just say what they mean?” (Or, as Henry Higgins says in My Fair Lady, “Why can’t a woman be more like a man?”) When dealing with your health care provider—male or female—this is often good advice.
Doctors have a much easier time answering pointed questions. For example, if you’re wondering why your doctor prescribed an antidepressant for your fibromyalgia after you just told him your mood was fine, don’t vaguely ask, “Do you really think this will help?” He’s bound to say, “Yes. See you in 3 weeks!” before bounding out the door and leaving you still baffled. Be direct and say, “I don’t understand why you’re suggesting an antidepressant. I don’t feel depressed. Do you think I have a mental disorder?” Your doctor might look startled, but then he will probably explain which symptoms he’s hoping will improve with the medication.
Speak Up and Share What’s Really Bothering You
Doctors aren’t mind readers; they don’t know what your concerns are if you don’t tell them. If you answer “no” when your doctor asks if you have any unanswered questions or concerns, he really believes that you don’t have any outstanding issues. If you doctor asks about your concerns, open up and share them. If he doesn’t ask, bring up issues yourself. You can say things like, “Before you leave, doctor, I’m really worried about . . . .”
If you’re especially worried about something, be sure to ask:
“Do you think my symptoms could be caused by cancer?”
“My sister thinks no one can possibly have as many problems as I do and that I’m probably just making them up. What do you think?”
“Will I still be able to work with fibromyalgia?”
“How can I keep up with everything I need to do around the house when I’m so exhausted?”
“I think that new medication you started me on is making me sick.”
Be a Good Reflector—Restate What You Hear for Clarification
A good way to make sure that you understand what your health care provider tells you is to rephrase what he says in order to be certain you heard it right; for example:
“You’re saying the pain, fatigue, bouts of diarrhea, and feeling like I’m in a fog are all part of fibromyalgia, and not caused by something serious, such as cancer or infection, right?”
“When you say to take this pill every day for fibromyalgia do you mean to take it every single day or only on those days where my symptoms are especially bad?”
These questions help clarify what your doctor tells you, and what you need to do to improve your health.
QUESTIONS TO ASK AT EVERY VISIT—UNDERSTAND YOUR SYMPTOMS AND HOW TO TREAT THEM
When you leave each appointment, make sure you can answer all of these questions:
Which of my symptoms are caused by fibromyalgia?
What non-drug treatments do I need to focus on?
How should I take my medication?
How long should the medicine take to work?
What side effects should I watch for?
When is my next office visit?
Don’t be afraid to say you don’t understand why something was prescribed for you. If you don’t understand why a treatment is prescribed, you probably won’t use it carefully or consistently. Your doctor should be able to clearly explain the reason for a specific treatment. Also, if you’re interested in hearing about a specific therapy and maybe trying it, ask whether it might be appropriate for you. Most doctors are eager to consider every treatment that might help you get better, so don’t feel as if you might be embarrassing her by asking about different treatments.
UNDERSTAND YOUR TREATMENT OPTIONS
Fibromyalgia treatment is often complicated. You may need to take more than one medication. You may also be prescribed non-drug treatments, changes in your sleep habits and diet, and an exercise program. Doctors often start treatments in stages—giving you one or two new things to try at each visit, rather than starting too many options at once. Some physicians will have a nurse explain the medication instructions. Feel free to ask for written instructions. Also, ask your pharmacist to clarify any questions that weren’t asked or answered in the doctor’s office.
* This article is excerpted with kind permission from Chapter 12 of The Woman’s Fibromyalgia Toolkit: Manage Your Symptoms and Take Control of Your Life by Dawn A. Marcus, MD, and Atul Deodhar, MD. © 2012 Dawn A. Marcus, MD, and Atul Deodhar, MD. All rights reserved.