In the interests of rediscovering all I can about ME/CFS, I made an appointment to see my GP. Although there’s tons of information online, I wanted to get a medical professional’s take on my personal syndrome and how I’ve been coping, current treatments, alternative therapies, and the possibility of starting a family. In ten minutes. It’s possible right?
Here’s something you might not know: just because doctors believe/accept this condition, it doesn’t mean they’re any more sympathetic or know more about it than you do. But I’ll let you decide for yourself.
Highlights of the consultation:
- I was informed that attitudes towards ME/CFS have progressed since I was diagnosed, and there are therapies to help.
- I was told I’m lucky not to suffer extreme pain.
- I was referred to a clinic that specialises in ME/CFS, which means a new round of blood tests to be done first. (The two separate appointments will have their own waiting times of course, ones for the clinic looked to be over a month, so nothing unusual there!)
- There was no record of my diagnosis in the system, no mention in my notes of me having ME/CFS. When the GP realised how long it had been since I’d seen a medical professional she was shocked and looked at me like I was crazy. Explaining I was told there was no need for me to see someone unless something changed significantly for the worse (and her admitting they probably couldn’t have done anything anyway) didn’t seem to help.
- I had it pointed out (several times) that I’ve changed a lot since I was twelve.
- I was never asked how severe my symptoms were or which ones I had specifically.
- The advice she gave was to pace myself. Good advice if I hadn’t received it when I was diagnosed and acted on it then.
- When she heard I lived at home with my parents and had no job she looked more shocked than before and recommended I get a part time job. It would be easy because I have a degree.
- When I mentioned I’d put off starting a family because I thought it would be too much for me and make my condition worse, she (again) looked at me like I was crazy. There’s no need for that, she said, that’s what a partner’s for, and finding one of those is what a job’s for. (?????)
The result? I have a referral, learnt that ‘acceptance’ doesn’t necessarily make things better, that I was incredibly lucky when I first went to see doctors about my illness, and I’ve had the value of the understanding, curious, ordinary people I’ve met during my life reinforced.
Today there were questions I didn’t ask because I felt my GP hadn’t troubled to understand my condition and my situation, instead making assumptions and judgements. Maybe she’s right and these blood tests will show I have some other condition that can be treated with a pill or an injection or whatever – it has been many years with many changes since I was twelve after all. Maybe I should do what she says: get a job and start living my life because I’m so young and missing out on so much by isolating myself. . .
Uh, wait a minute. What was that about the progression of attitudes toward ME/CFS?