It’s an exhausting and debilitating condition, 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.
Reviewed Physically by Niya Jones, MD, MPH
Fibromyalgia is usually a life changing disease. But what happens when your family does not support you? You may feel that you can not ask for the 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. Getting support from family members who just do not understand or support it as much as they can start being a good communicator.
Pain related to fibromyalgia: how to help your family understand
It is difficult for a person not suffering from chronic pain to imagine what it means to live with fibromyalgia. Here’s how you can approach a conversation about what you are going through.
Dissipate 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 Diseases (according to which more than 5 million people in the US 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 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 progressively take the supplements nutritional and make the exercise as much as possible. Informing family members of 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 do not know if she is able to do anything in advance, says Teitelbaum. It is common for people 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 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, be aware that three things need to be done to make fibromyalgia support work well:
People with fibromyalgia must be able to ask for help. You need help, like any other sick person, so do not 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 time to recharge.
Family members must be able to answer yes or no. Even if you need help, your family members should be able to help you without exhausting you. “Family members and caregivers need to be able to say no when they do not 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.