Today I’ve been basically drowning in anxiety since I first woke up. As such, since my response to anxiety is to sleep more, I’ve napped for most of the day and thus got nothing done.
In a week’s time, I’m going to the hospital that decides what treatment I need. That decides whether I get benefits. That decides whether I can continue to recieve painkillers. That decides whether I get rehabilitation or palliative care. That finally nails down and names whether I have joint hypermobility syndrome, or Ehlers-Danlos, or Marfan’s, or something else.
Part of me is terrified, because of a childhood of being told that there was no WAY I’d be allowed to be ill, that they’ll take my painkillers and orthotics away and tell me to just grow a pair and deal with it. Because there’s “those poor disabled people” and then there’s me, who is obviously not ill and just wants attention or sympathy, or is lazy.
A few weeks ago, on holiday, I had this exact same feeling, whilst I was curled up in pain from a dislocated hip. I had convinced myself that the pain was psychosomatic, that I wasn’t really in the kind of pain that merited morphine, and that I was an idiot and a terrible person. My best friend knelt by my bed, took my hand, and bent my fingers back, one after the other, showing me that it didn’t hurt me. Pinched the skin of my forearm and stretched it up, so that I could see the night-light through it. Asked me how long the pain in my back had carried on for (Fifteen years). reminded me that, unless I had the power to physically destroy collagen with my thoughts, I was hypermobile and in pain because of it. He got me persuaded to take my morphine, and a diazepam to stop the spasm, and lay with me holding my hand until I was able to sleep.
I think I need to remember that if I was “not ill enough”, I wouldn’t get that degree of sympathy from someone who has as low a tolerance for theatricality as my best friend.