I’ve been ill with ME/CFS for the nearly three years now, and my symptoms wax and wain with the seasons, the winds and any kind of randomness. So I’m not surprised when something new goes wrong.

But this year I am having a new issue — I can barely bring myself to go to medical appointments.

I’m not 100% sure why. There’s a lot of plausible reasons though i.e. the accumulated trauma of having been judged, blamed, scrutinised or dismissed by most of the specialists I have seen; feeling degraded, disempowered and upset by many of these experiences; that I don’t feel like going over ‘the whole story’ again when it seems that people don’t listen to it anyway and it is painful for me to recount; that I don’t want to catch any bugs from other patients in the waiting room; that I don’t want to go further into debt to pay for appointments; that I feel like at least one practitioner I saw was a snake oil salesman; and that it all just seems pretty hopeless. Probably a combination of all of the above.

But I think most of all, quite possibly because of all of those things, I feel so stressed about going to appointments now, especially with a new practitioner, but even with my GP who is nice and understanding. My own self-criticism doesn’t help —I always feel like I am failing when I go, like I’m not a good enough patient because I’ve been trying to sort out something else in my life (like my car, or work) instead of hardheadedly pursuing some kind of solution to my prolonged illness, even though the illness itself makes it so difficult to balance things.

So it seems like this pointless source of stress and I find it difficult to convince myself to go. I’ve cancelled two appointments this year with a specialist who is nice and understanding (and pretty honest about there not really being answers) just because the idea of going makes me feel so stressed.

If it is a new practitioner, I can’t really bring myself to call to make appointments – I end up hanging up before they answer. I’ve had a referral to go to a psychologist for ages but the last one I tried going to was such a nightmare that I just haven’t been able to pick up the phone to make an appointment without feeling sick in my gut.

I can make myself do online bookings and to go to my GP for checkups, but even just sitting in the waiting room the other day for a regular B12 injection at my GPs (months late because I don’t know where the year has gone) I felt so tense and uncomfortable despite having no fear of needles (and having been prodded with a lot of them in the past few years!). 

In the first few years of my illness I felt like I had to keep pushing for answers, now I just feel like shying away from medical appointments to protect myself. But obviously I still want to get better, I want more energy, I want my life back. But at this stage it’s hard to feel like anyone has the answers, so why spend my precious energy on being disappointed?

(Image – Poke by Greer Lankton, 1980)