One of the challenges of fibromyalgia is that you don’t look sick. Family and friends may have a hard time accepting your illness, because it is not visibly obvious to them. Since fibromyalgia is a condition that waxes and wanes; it can be difficult to understand why you are able to do some things on one day and not the next.
Therefore, you will need to make every effort you can to help educate and communicate the reality of your situation to those who are part of your life. It is useful to explain to your friends and family that it is not all in your head. Share with them information that explains the nervous system abnormalities and abnormal biochemistry.
Take deeply into account that your “invisible” illness is going to have an impact on the people in your life … especially your immediate family. Together you need to understand what it means to have fibromyalgia – that it is no one’s fault that this illness has become a part of your lives, and that by working together and dealing with the problems and creating solutions, everyone will benefit in the future.
One of the most important things you can do to help ensure that your family and friends are understanding and supportive is for you to recognize that fibromyalgia is changing their lives too. Even though at some point you might feel that all the attention should be on you and helping you to get better, stop and appreciate what it feels like to be on the other side. Imagine your family’s feelings of frustration, worry, and fear. Learn to accept their reality.
Just like you, they need to have a sense of understanding of this disease, to feel some control over it, and to know that there are ways that they can become a part of the solution. You might find that for some family members it is easier to ignore the problem, because then they do not have to deal with it. But just like you, your family needs to accept the situation for what it is right now and to find ways to communicate and work together to improve things for everyone.
In order for your family (or the people who play the biggest role in your life) to become a health-care team member, they must become educated about fibromyalgia, be reassured by credible professionals that your symptoms are very real, see that you are dedicated to taking the necessary steps to improve your quality of life, and accept that their support can be a major factor in your chances of getting better.
Be truthful with your family. If they can see that you are actively working toward implementing a self-management plan (no matter how little or how much effort you are able to put into that process), that you communicate your level of pain and fatigue (not only when it is bad, but also when it is good), and that you support them with the issues they are having to face, you will find yourself in a cooperative situation, where everyone is working towards the same goal: to help you get better.