When I first went out of work ten years ago, I was a wreck. I had no idea what was going on. Neither did my primary doctor. As long as my tests were showing something was going on (but not what), he believed and knew I was sick, but had no idea what to do other than pain medication, muscle relaxers, and NSAIDS. And more tests. Scared was one way to put it. As my tests began to return to normal after steroid treatment, but my symptoms didn't, he began to think I just didn't want to return to work and I was a hypochondriac. So he sent me to a rheumatologist with whom he expected to tell me I was fine and to send me back to work. Three of them in fact. They all looked at the labs, the treatment, did a brief physical and came to the same conclusion: fibromyalgia. The first one pretty much said I was screwed. (Not quite like that, but there was no treatment, no cure, just that I would have to suck it up and deal basically. It wasn't ever going to get better). The second? Very similar, except if I had listened to him, I would be living off of a morphine drip for the rest of my life. Then I met the third. He wanted to run additional tests, but told me there are treatments to help control it (medications, exercise such as swimming, stretching, etc., a common sense diet approach [if it causes pain, don't eat it]), and many things that could help so that one day, I "might" be able to return to work." And he suspected that if I was predisposed to it, it was triggered by a virus that was going around in the area. I tested positive for the recent infection. Naturally, my primary was pissed and found a way to fire me as his patient, but I had an answer. I was still scared, still in incredible pain, but it was something.
I used to spend my mornings online before work talking to my best friend and occasionally in a chat room. I began searching online for information about fibromyalgia when I came across an online support group--a chat room that was for fibromyalgia and other invisible diseases. I was one of the youngest--if not the youngest--in the room, but I was able to find out more about the disease and autoimmune diseases (which I had no cause to think I had one then). Other than my mother and the small handful of friends who actually stayed around, no one understood or believed I was sick. I looked normal. Sometimes I almost acted normal. So why wasn't I working or living life like a normal 20 something? I must've been just lazy and liked painkillers. But it was in that forum I realized that they understood because they were living with the same problems I was. And we helped each other through a lot. And we listened. And laughed. And cried. Many of us never met personally, but we all knew each other. That was when I decided if I was ever able to work again, I wanted to help those with invisible illnesses. Because I understood. I still wanted to be a mechanic of course. (Which took me years to realize I couldn't be anymore).
My mother found a local support group a few minutes from my house a few months after my diagnosis. I learned quickly the difference between online communities/support groups and in person support groups. I went once. At least in this case, unless I had lost my house, my husband, my kids, everything I owned because of my disease, I had no reason to need a support group. I had only lost my career. I was too young. So I stuck with online groups. I always found it amazing how total strangers behind computer screens can be so supportive and caring towards others. I often find myself wondering how they're doing and why something like that rarely exists today.
