It's an exhausting, debilitating condition, but fibromyalgia can feel even worse if your family doesn't support you. You can turn them around by helping them better understand what you're experiencing.
Having fibromyalgia is usually a life-altering condition. But what happens when your family isn't supportive? You might feel as if you can't ask for the fibromyalgia support you so desperately need.
Some people have treated fibromyalgia as if it's not a real disease, says Jacob Teitelbaum, MD, the Kona, Hawaii-based author of From Fatigued to Fantastic! and medical director of the Fibromyalgia and Fatigue Centers, Inc.
But it is a real disease with very real symptoms. Gaining support from family members who just don't "get it" or aren't as supportive as they could be starts with being a good communicator.
Fibromyalgia Pain: How to Help Your Family Understand
It's difficult for someone who doesn't have chronic pain to imagine what living with fibromyalgia is like. Here's how you might approach a conversation about what you're going through.
Dispel their doubts. Educate your family about fibromyalgia with information from respected experts and institutions, such as the National Institute of Arthritis and Musculoskeletal and Skin Diseases (which states that more than 5 million people in the United States live with the syndrome).
Explain that fibro is like blowing a fuse. Tell your family members that fibromyalgia is like an energy crisis: You use more energy than your body can make, Dr. Teitelbaum says. "You've gotten to the point where you've blown a fuse," he adds.
Another way to help people understand fibromyalgia pain is to tell them it's like having the flu every day, including feeling achy, fatigued, and foggy.
Let family members know, however, that you're doing what you can to beat fibromyalgia pain and to make yourself feel better. It's what Teitelbaum calls SHINE: getting enough Sleep, getting Hormone treatment if you need it, treating Infections as soon as they occur, taking Nutrition supplements, and Exercising as you're able to. Letting your family members know about this strategy will help them understand how to help you feel better.
Explain about the need to listen to your body. An unfortunate part of living with fibromyalgia is that you often won't know if you're capable of doing something ahead of time, Teitelbaum says. It's common for people to have to wait until the last minute before they know if they can participate in an activity or if they need help. Explain to your family that this is part of life for people who live with fibromyalgia, but that you'll do everything you can on the days that you feel up to it.
Three Steps to Getting Fibromyalgia Support
As you prepare to ask for help, know that three things need to happen for fibromyalgia support to go smoothly:
People with fibromyalgia need to be able to ask for help. You need help just like anyone else who has an illness, so don't shy away from asking. The best way to ask for help is to be specific about what you need, such as asking someone to make dinner so you can have time to recharge.
Family members need to be able to answer yes or no. As much as you may need help, your family members should be able to offer a helping hand without becoming exhausted themselves. "Family members and caregivers need to be able to say no when they don't feel like helping," Teitelbaum says. "Otherwise they're going to burn out."
People with fibromyalgia need to be able to accept an honest answer from loved ones. Accepting help can be a relief, and you should take it when family members are willing. But it's also important to accept a "no" from a relative who may be feeling overwhelmed.
Following these steps will help you garner support from friends and family now and into the future. When you have support from loved ones, living with fibromyalgia will be easier.
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