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One Man's Perspective on Living with Fibromyalgia - Page 2

© Cynthia Webber (Jausten)

Simple things, like walks in the country, movies, the theatre, and art galleries, all became torture because of that searing pain to my neck and shoulders. Looking like my old self, my wife simply could not grasp what had gone wrong. First, I think that she thought it was some problem with her. That is, she thought I had another female interest. Then she realized that I was ill, that it was permanent, and thus decided that she didn't want to live the prime of her life under those circumstances.

I've heard similar stories via visitors to my web site, and I was recently contacted by a lady, a former ballet dancer, who said that she was involved with the most wonderful man, but that he had fibromyalgia. It became clear to me that her questions had to do with his lack of time for the relationship and lack of libido. When I shared my experience, she became very angry. I had to explain that a relationship with a male dealing with fibromyalgia has missing elements. She didn't want to hear that message. Rather, she wanted a solution. It is almost impossible for the healthy partner, family, and friends to understand how a male who looks normal and is, with the help of medication, active in certain ways, yet is unable to be involved in a relationship or a career in the same way as he was before.

Men have been conditioned to tough it out and to suffer in silence. I am always reminded of Bobby Orr, one of the greatest hockey players ever, being booed when he tried to play in the NHL with destroyed knees and could not play up to form. That is the way men with fibromyalgia are treated, and we feel terrible about it. We also know there are only two options available to us - cope or don't cope. There is nothing to be done but cope, so we cope. Even if, as is so often the case, relationships, careers, and financial security fall away in the process.

Jim averages three to five e-mails per day from people who have visited his site, and the e-mail below is one that he found really touching. In his words, "It makes the work we do worthwhile!"

My sister,(24) and I,(19) have been suffering with severe pain from childhood. Every doctor we have been to has brushed it off as "growing pains" or a psychological problem. In short, no one has ever taken our problem seriously. It was only recently that we acquired a computer and were able to search the Internet (a feat here in Karachi, Pakistan!) for information on related diseases on our own personal pursuit.

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