11 Ways to Cope With a Lack of Fibro Support

Dealing with chronic illness

If you’re in chronic pain, it’s challenging for you and your friends and family. This is particularly true if you have an "invisible" condition like fibromyalgia, which is hard for other people to understand.

"I think people cannot see how it affects us—at least not like a cast on a broken arm or an open wound," says Lyn Batt, 58, who has fibromyalgia. "I remember looking at my leg thinking that the burning, knife-like pain did not even make my skin red."

If you’re not getting the support you need, try one of these 11 tips.


Share your knowledge

Nothing hurts more than to have someone dismiss your pain or treat you with skepticism and resentment if, for example, you can’t clean the house the way you used to. Unfortunately, it happens.

If he or she is willing, bring that person along to your doctor’s visits, says Charles Cutler, MD, an internist in Norristown, Pa., and former chair of the American College of Physicians Board of Governors.

Talk beforehand about the questions you both might want to ask and the issues you’d like to discuss. Be sure to write them down before you go


Expand your support system

Even supportive friends can tune you out if you talk about the same pain every day, says Jacob Teitelbaum, MD, medical director of the Fibromyalgia & Fatigue Centers and author of From Fatigued to Fantastic. "It almost becomes like a weather report."

Instead, share with others. "If you just need to vent or have somebody hear and share, that’s what pastoral counselors, support groups, and online support groups are for," he says.

Fibrotalk has an online forum. The National Fibromyalgia Association and endfatigue.com both have support group directories.

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Be choosy

Support groups, whether online or in real life, tend to fall into two categories, says Dr. Teitelbaum: those where people go to vent, get emotional support, and talk about the difficulties in their lives, or those where people focus on new research and getting well.

Depending on your needs at any given time, both approaches may work for you. But don’t be afraid to ditch or switch if a group just isn’t a good fit. "If you feel like you’ve been sucked dry by vampires, don’t go back," he says.


Find a new doc, if necessary

It’s bad news if a relative doesn’t have your back, but unacceptable if your doctor doesn’t.

Supporting chronically ill patients is one of the most important functions of a primary care doctor, says Dr. Cutler.

"Patients really do want to look to a primary care doctor, one that has both the personality and the practice setup that allows for the time to aid a patient who’s dealing with chronic illness," Dr. Cutler says. If you’re not happy, ask around. "If your neighbor, friend, or cousin likes his or her doctor and you like your neighbor, friend, or cousin, then the chemistry might be right."



Let people say "no"

If you have a chronic illness, you need to be able to ask for help when you need it, says Dr. Teitelbaum. But you also need to be OK with family and friends saying "no" sometimes, he adds.

When people feel they cannot say no, it can lead to an unhealthy, codependent relationship, which may ultimately trigger burnout in even your strongest supporters, according to Dr. Teitelbaum.

"This will leave it feeling good on both sides," he notes.


Consider therapy

If you have a chronic illness and your relationship is blowing up at the same time—such as a spouse or partner who’s openly hostile or doesn’t believe you are truly sick—seek counseling.

Family therapy or couples counseling can help you and your loved ones adjust to the demands of a debilitating, life-changing illness.

"The type of counseling is not as important as the mind-set of the counselor," Dr. Teitelbaum says, adding, if it feels good, it’s a good sign.

Dr. Cutler says cognitive behavioral therapy helps people work on their coping approaches, and talk therapy can be "hugely helpful."



Educate the people around you

Helping people understand what’s going on in your body and why it’s making you miserable can be frustrating, especially if—as with fibromyalgia—you look perfectly well, says Batt.

"People need to understand, they need to learn, because without that education they can’t see it, and when they can’t see it, they don’t believe it," she adds.

Luckily, there’s a wealth of information to help people understand chronic illnesses. Dr. Cutler recommends doing a little Web surfing. Reliable sources include the Mayo Clinic and MedlinePlus.



Sharpen your own coping skills

People with fibromyalgia and other chronic illnesses need support, but they also need to develop their own tools for managing the disease and coping with pain.

Support groups can be helpful in this respect; you can talk with other people about what works for them, and what doesn’t.

One strategy that might help is distracting yourself, either by reading, watching a movie, or engaging in a favorite hobby; studies suggest distraction is an effective coping mechanism when it comes to pain.




Find a medical home

According to Dr. Cutler, the practice setup that works best for chronically ill people is the patient-centered medical home, in which patients have a physician-led team that oversees all their needs. More practices are adopting this approach.

"You don’t need only a doctor; you may need a nurse practitioner, a social worker, a psychologist, a dietitian, and all of that is provided at a medical home," he says. It can help you get support, he adds, because doctors have more time to spend with patients.

To learn more, go to the Patient-Centered Primary Care Collaborative and the American College of Physicians websites.



Join in when you can

When you’re up for it, make time for fun with family and friends—even if it’s just a trip to the mall, Dr. Teitelbaum says.

This doesn’t mean you have to tramp through dozens of stores; you can hang out and rest in the food court when you need to. Just let others know that they don’t have to hold back their activities and that you’ll join them for what you feel you can handle.

If you like to travel, you should; again, just don’t push yourself too hard and make sure your companions understand your limitations.

"You can still join in and not feel excluded and left out," Dr. Teitelbaum says.

Think of "no" as an opportunity

Batt says her family has been very supportive overall, but there have been moments—especially early in her illness — when they got tired of helping.

"There are times you’re counting on your family and something else comes up and interferes and takes their focus away," says Dr. Cutler. "I think that’s part of the human condition."

When this happens, Dr. Teitelbaum says, look at it as a chance to learn other ways to get help, or to help yourself. In these situations, people should "reexplore what they can do for themselves," he adds. "They may be pleasantly surprised."