It’s a grueling and debilitating condition, but fibromyalgia can be even worse if your family doesn’t support you. You can transform them by helping them better understand what you are going through.
Physically reviewed by Niya Jones, MD, MPH
Fibromyalgia is usually a life-changing disease. But what happens when your family doesn’t support you? You may feel that you cannot ask for fibromyalgia support that you both need.
According to Jacob Teitelbaum, MD, author of From Fatigued to Fantastic , based in Kona, Hawaii, some people have treated fibromyalgia as if it were not a real disease . and medical director of Fibromyalgia and Fatigue Centers, Inc.
But it is a real disease with very real symptoms. Get support from family members who simply don’t understand or support as much as they can start to be a good communicator.
Pain related to fibromyalgia: how to help your family understand
It is difficult for a person who does not suffer from chronic pain to imagine what it means to live with fibromyalgia. Here’s how you can face a conversation about what you’re going through.
Dispel your doubts. Train your family on fibromyalgia with information from reliable experts and institutions, such as the National Institute of Arthritis and Musculoskeletal and Skin Diseases (according to which over 5 million people live in the United States with the syndrome).
Explain that the fibro is like a fuse. Tell your family members that fibromyalgia is like an energy crisis: you use more energy than your body can produce, says Dr. Teitelbaum. “You have reached the point where you blew a fuse,” he adds.
Another way to help people understand the pain of fibromyalgia is to say that it’s like having the flu on a daily basis, including feeling pain, fatigue and fog.
However, tell your family members that you are doing what you can to overcome the pain associated with fibromyalgia and feel better. This is what Teitelbaum calls Shine: sleep enough, take a treatment hormonal if you need it, treat infections gradually taking the supplements nutritional and make the ‘ exercise as possible. Informing your family about this strategy will help you understand how to help yourself get better.
Explain the need to listen to your body. An unfortunate part of living with fibromyalgia is that you often don’t know if you can do something in advance, says Teitelbaum. It is common for people to wait until the last minute before knowing if they can participate in an activity or if they need help. Tell your family that this is part of the life of people with fibromyalgia, but that you will do everything you can on days when you feel good.
Three steps to get help for fibromyalgia
When you are about to ask for help, keep in mind that you need to do three things to get fibromyalgia support working well:
People with fibromyalgia must be able to ask for help. You need help, like any other sick person, so don’t hesitate to ask. The best way to ask for help is to explain exactly what you need, for example, ask someone to prepare dinner for as long as it takes to recharge.
Family members must be able to answer yes or no. Even if you need help, your family should be able to help you without getting tired. “Family members and health professionals need to be able to say no when they don’t want to help,” Teitelbaum said. “Otherwise, they will burn.”
People with fibromyalgia must be able to accept an honest response from their loved ones. Accepting help can be a relief, and you should accept it when family members want it. But it is also important to accept the “no” of a family member who may feel overwhelmed.
Following these steps will help you get support from your friends and family now and in the future. When you have the support of your loved ones, it will be easier to live with fibromyalgia.