7 Ways to Speak Up for Yourself When Seeking Fibromyalgia Care

When you’re living with fibromyalgia, getting effective treatment can be as difficult to endure as the physical symptoms of the condition itself.

The good news is, you can improve your fibromyalgia care by learning how to advocate for yourself. Here’s how.

7 Ways to Advocate for Your Care When You Have Fibromyalgia

It can feel overwhelming to deal with the complexity of fibromyalgia symptoms, gaps in supportive care, and limited treatment options, while also navigating our fragmented healthcare system, says Melina Oien, who lives with fibromyalgia in Walla Walla, Washington, and is a board-certified patient advocate and deputy director of Greater National Advocates.

But learning how to advocate for yourself at the doctor’s office can make the process a bit easier. Here are some strategies for approaching your next appointment with confidence.

1. Track Your Symptoms

“Use a journal or app to document your symptoms, such as pain levels, fatigue, sleep quality, and flare patterns,” says Oien. And if you can identify triggers that exacerbate symptoms, that’s helpful, too. “This grounds the conversation in data, which tells your doctor that your symptoms are impactful, and it may give valuable clues to the causes.”

2. Prepare for Every Doctor’s Appointment

Before you arrive for each appointment, be ready with your concerns, questions, and symptoms you want to discuss, says Oien. “And be sure to gather medical records and documentation, so the provider has the full context of your particular case,” she adds. Bring a pen, so you can write down your provider’s responses at the appointment, and cross off each topic as it’s covered.

It may also be helpful to take notes during your appointment, so you have a record of what was discussed. If note-taking is too strenuous or stressful, ask if you can record audio of the session on your phone.

3. Be Candid About the Symptoms You’re Having

When speaking to your doctor, try not to minimize your symptoms. Putting on a brave face won’t help you get the care you need and deserve.

“If you downplay your symptoms, providers are much less likely to be concerned about them,” says Oiens. She suggests writing down a few statements you can call on quickly if you find yourself struggling to describe symptoms or downplaying what you’re going through. “This way, if you’re struggling emotionally or cognitively in the moment, you have a phrase you’ve practiced,” she adds.

4. Ask Questions — and Then Ask Them Again

Trying to make sense of medical terms you’ve never heard before can leave you confused and anxious. “If you’re struggling to understand, it’s okay to let your provider know you’re having trouble with the terminology and to ask them to explain it in a less technical way,” says Oien.

It’s also acceptable to pose follow-up questions anytime, both during the visit and afterward, through electronic messaging. In fact, your doctor should encourage this behavior. If they don’t, that may be a sign that it’s time to reconsider your care team.

5. Reach Out Between Appointments

Don’t wait until your next meeting to voice new concerns or worsening symptoms. Communication can occur between appointments, says Oien. “If your doctor doesn’t hear from you, the default assumption can be that things are going fine,” she says.

Talk with your provider about the best way to approach this, whether that’s logging symptoms in a patient portal or checking in with your doctor’s medical assistant every so often.

6. Bring a Trusted Loved One to Your Next Appointment

Support from a family member or close pal can “help you stay grounded and remember what was said during the appointment. And if the person is comfortable in medical situations or understands medical lingo, even better,” Oien says. Partnering with someone you trust also means they can “validate your experience if things go awry.”

Even if you don’t bring your loved one into the appointment with you, knowing they are in the waiting room and you can discuss it with them afterward can be a great source of comfort and support.

7. Change or Broaden Your Care Team

If you feel misunderstood or unsupported by your current doctor, it’s more than acceptable to move on from them. “Patients have a right to a second opinion, and it’s okay to switch providers if yours isn’t listening,” Oien says. But you may want to be pointed in your next move. “Rather than asking for a referral and accepting wherever your provider sends you, request a specific physician of your choosing.”

You might find it helpful to get recommendations through an online support group of other people living with fibromyalgia. Or check out a physician directory, such as the one offered by the National Fibromyalgia Association.

The Takeaway

• Fibromyalgia has many symptoms that are similar to those of other health conditions. This makes it hard for people living with fibromyalgia to get diagnosed, find the right provider, and receive treatment that works.
• Going to appointments with a list of symptoms and questions, asking follow-up questions, bringing a support person to appointments, and asking providers to explain things in clear terms are useful strategies for getting the most out of appointments.
• If you do not feel validated by your provider or are unhappy with the treatment plan, consider changing doctors or expanding your care team.