Combating Invisibility: Part II
closest are those whose lives will be most directly affected by our problems. They, above all, need to understand exactly what fibromyalgia is and how it affects you – and how that affects them.
We can't expect them to sit down and devour whole books on the topic, as they will probably be busier than before, trying to take on those responsibilities that we can no longer cope with effectively. But there are articles and letters available, both on the Internet and in books such as Devin Starlanyl’s Fibromyalgia and Chronic Myofascial Pain: A Survival Manual which explain both how you feel and how you will be affected – both physically and psychologically – that are a great starting point.
As soon as I was diagnosed I printed out her Guide for Relatives and Family and gave it to my husband to read. That proved to be a great starting point. As I learned more in my own research I began to explain certain things to him if they affected him in any way – like how sleep deprivation causes fibrofog, or what a flare is – and how that means that things I may be capable of some days I am simply unable to do on others. I tend to start with the definitions of things and then explain the results in a somewhat impersonal way. “This is what people with fibro suffer. . .” rather than “I really hurt and I'm too tired.”
With anyone I am trying to educate, I try hard to explain rather than complain – whining gets you no sympathy but education does.
Conclusion As long as we are satisfied in our own minds that we have a clinical case of fibromyalgia then the skepticism of most of the world shouldn't bother us too much - although that's easier said than done. Instead, we must concentrate on educating and raising the level of awareness of those people with whom we must interact in our daily lives, concentrating most on those who will in some way be affected by our conditions – and by those whose reactions can most affect us. If we all did this, then the level of awareness would increase exponentially, until fibromyalgia becomes as accepted as other syndromes.
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