Fibromyalgie: comment faire comprendre à votre famille

It's an exhausting condition debilitating, but fibromyalgia can feel even worse if your family does not support you. You can return by helping them to better understand what you are experiencing.

Having fibromyalgia is usually a life-altering condition. But what happens when your family is not favorable? You might feel as if you can not ask for the support of fibromyalgia that you so desperately need.

Some people have fibromyalgia treated as if it is not a real disease, says Jacob Teitelbaum, MD, author of Kona, Hawaii-based De Tired to Fantastic! And medical director of the Centers for Fibromyalgia and Fatigue, Inc.

But it is a real disease with very real symptoms. Get support from family members who are not just "get" or are not as favorable as they could be starts with being a good communicator.

Fibromyalgia pain: how to help your family understand

It is difficult for someone who has no chronic pain to imagine what living with fibromyalgia is like. Here is how you can approach a conversation about what you are going through.

Disperse their doubts. Educate your family about fibromyalgia with information from experts and respected institutions such as the National Institute of Arthritis and Musculoskeletal and Skin Diseases (indicating that more than 5 million people in the US living with 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 do, says Dr. Teitelbaum. "You have reached the point where you have blown a fuse," he adds.

Another way to help people understand fibromyalgia pain is to tell them that it's like having the flu every day, including the feeling achy, tired and foggy.

Let family members know, however, that you do what you can to fight fibromyalgia pain and make you feel better. This is what Teitelbaum called SHINE: get enough sleep, get hormonal treatment if you need it, treat infections as they occur, taking nutritional supplements and exercise as you can. Let the members of your family aware of this strategy will help them 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 do not know if you are able to do something in advance, Teitelbaum said. It is common for people to have to wait until the last minute to see if they can participate in an activity or if they need help. Explain to your family that this is part of life for people living with fibromyalgia, but that you will do what you can on days when you feel up to it.

Three steps to get fibromyalgia support

As you prepare to ask for help, know that three things must happen for the support of fibromyalgia go smoothly:

People with fibromyalgia should be able to ask for help. You need help as anyone else who has a disease, so do not hesitate to ask. The best way to ask for help is to be specific about what you need, like asking someone to dinner so you can have time to recharge.

The family members must be able to answer yes or no. As much as you might need help, the family members should be able to offer a hand without exhausting themselves. "The family members and caregivers should not be able to tell when they do not want to help," says Teitelbaum. "Otherwise they will burn."

People with fibromyalgia have to be able to accept an honest answer from relatives. Accepting help can be a relief, and you should take it when family members are located. But it is also important to accept "no" to a parent who may feel overwhelmed.

Following these steps will help you gather the support of your friends and your family now and in the future. When you have the support of relatives, living with fibromyalgia will be easier.