As I mentioned in week 12 I haven’t actually ever been officially diagnosed, which to be quite honest makes me feel like an outsider quite a lot of the time. There was however a day in which my GP and I decided that I fit the CFS/ME description and I can remember the initial reaction being some weird kind of mixture of hope, excitement and utter terror at what might lie ahead.
Getting a diagnosis (or discovering a symptom match) after such a long time waiting in the unknown is both a blessing and a curse.
A blessing because FINALLY it exists, FINALLY it has a name and there is this glimmer of possibility that you don’t have to just keep aimlessly trying different possibilities and that maybe you can do something to actively work towards recovery.
A curse because now you KNOW that it’s real. Now you KNOW that it’s forever… and now you KNOW that there is truly no escaping.
It’s a celebration that you now have proof it’s not just in your head, but it’s also a commiseration that it isn’t just in your head. Somehow that seems simpler, like perhaps if it were just in your head getting rid of it would somehow be easier (although we all know there’s no truth in that statement).
Knowing that I had something that would most likely stay with me my entire life was the most terrifying news I’d ever been given. Knowing that my condition could get better or worse with no notice was scary, but the worst part was actually that the unknown had just shifted into a new category. How are you supposed to deal with this kind of news? What do you do next? How do you approach it? There were so many decisions to make and I was so tired. You can imagine now why I chose not to chase the official diagnosis. When following guidelines I found online for ME/CFS showed improvement in my health, it really was a no brainer.
I think that perhaps the first thing I did once we’d realised I probably had Myalgic Encephalomyelitis was to google it. I know, not always the best option, but when my GP had limited options and the nearest specialist we knew of was on the other side of the country self-research was the best option I had. It became my little study project and before long I had a basic enough understanding of what other people had tried and how I could start learning to listen to my body. It’s a long journey and I continue to grow and learn every single day.
This post is Part 13 of 52 in the series – A Year of Growth.
The series is a celebration of the first anniversary of The Truth About M.E and is designed to help me grow through my illness throughout my second year of blogging. I look forward to having you along for the journey!