October 24, 2012

The Confusion That Ensued

Posted in Journey tagged , , , , , , , , at 7:56 pm by Reva

So now I had a diagnosis I thought the search was over. But in reality it was just beginning. I wanted to find out how it was treated but with so little support this was difficult. I hit the internet and found a forum. The forum was a great way to read about other peoples’ experiences, but also it put me in touch with people who could understand what I was going through.

Eventually though the forum became overwhelming. All the things other people seemed to be trying, discussing. I found that I didn’t know where I fit in – all these people had been diagnosed with “Chronic Fatigue Syndrome” or “ME”. I’d been diagnosed with “a fatigue syndrome”. Was this the same thing? Some people seemed to get really hung up on the details.

While I found some wonderfully supportive people (some whom I still keep in touch with) and I found the forum to be helpful overall, the cattiness over who really had ME/CFS and what it was really called, what a proper diagnosis entails and so on had me confused and was exhausting. The solace I initially found was disappearing and I wondered if I was relying too much on the cyber world so I stopped spending time there.