Fibromyalgia: does your family understand?

It is an exhausting and debilitating disease, but fibromyalgia can be even worse if your family does not support you. You can transform them by helping them better understand what you are going through.

Marie Suszynski

Medically examined 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 like you can’t ask for the fibromyalgia support 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. Getting support from family members who just don’t understand or support them as much as they could start with being a good communicator.

Fibromyalgia pain: how to help your family understand

It is difficult for someone without chronic pain to imagine what it means to live with fibromyalgia. Here’s how you can start a conversation about what you’re going through.

Dispel your doubts.  Educate your family about fibromyalgia with information from experts and reputable institutions, such as the National Institute of Arthritis and Musculoskeletal and Skin Disease (where more than 5 million people in the United States live with the syndrome).

Explain that fibro is like blowing a fuse.  Tell 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 have blown a fuse,” he adds.

Another way to help people understand the pain of fibromyalgia is to say that it’s like having the flu every day, including feeling pain, fatigue, and fog.

However, let family members know that you are doing what you can to beat the pain of fibromyalgia and feel better. This is what Teitelbaum calls SHINE:   sleep   enough, take a treatment   hormonal if you need it, treat    infections    progressively take  the supplements   nutritional   and    make    the  exercise  as much as possible. Telling your family members about this strategy will help you understand how to help you feel better.

Explain the need to listen to your body.  An unfortunate part of living with fibromyalgia is that you often don’t know if it is capable of doing something beforehand, 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. Explain to your family that this is part of the lives of people with fibromyalgia, but that you will do everything you can on the days you feel good.

Three steps to get help for fibromyalgia

When you are about to ask for help, be aware that there are three things you must do to make fibromyalgia support work well:

People with fibromyalgia should be able to ask for help.  You need help, like everyone else with illness, so don’t hesitate to ask. The best way to ask for help is to explain exactly what you need, for example, asking someone to cook dinner so you can recharge.

Family members should be able to answer yes or no.  Even if you need help, family members should be able to help you without getting exhausted. “Family members and caregivers should be able to say no when they don’t want to help,” said Teitelbaum. “Otherwise, they will burn.”

People with fibromyalgia need to be able to accept an honest answer 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” from a family member who may feel overwhelmed.

Following these steps will help you gain support from 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.

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