I’m living with a rare condition with a doctor who knows sod all about my condition even though I’ve been feeding her information for several years. I’m starting to think she doesn’t want to know and that it may be time to change to a new gp. I’m still with the one that labelled me a hypochondriac up until 2008 when I demanded to see the HMS/EDS specialists, and she was ok, and doing a good job.........… up until my appointment the other day when she told me that i'm causing my Gastro-Intestinal system spasms on purpose & said i should just stop it & they'll go away! when i corrected her & told her it's caused by my IBS & connective tissue disorder making my gut twitchy (had small bowel manometry so know this for sure…) she said to just avoid my triggers (which are eating & drinking anything & she knows this). At one point she asked me what she wanted her to do even though I’d clearly told her a few seconds ago…. So I repeated that I just need help to ease them a little and make them bearable and that I don’t know how to do it myself as I’m not a doctor and so I came to see you. She took offence at something I said and apparently I was aggressive (although I never raised my voice, used polite language and was curled up with a spasm so body language wasn’t aggressive…. So I have no idea what she was talking about). Methinks she’s slipping back into her old ‘there’s nothing wrong with you, stop wasting my time’ mode. At this point she ushered me out of the room without offering any help whatsoever. Gee thanks….
so apparently i can’t get any help for the crippling spasms while most other people can. how is that fair?
Evidently I’m not permitted to see my doctor with stuff that other people come to see her about (lets face it IBS and spasms are extremely common and lots of people will be coming to her about it and most will get help). So I’m addition to not being able to go to A&E for stuff that are major emergencies for ‘normal’ people (was made to beg for treatment last time and I had tachycardia and severe chest pains, then was left unsupervised for 9 hours (and unconscious for several hours of that) in the main waiting room) I’m not allowed to go to my gp for stuff that ‘normal’ people would struggle to deal with. Great. How on earth can we look after ourselves properly without an adequate medical team to help us? My condition affects my connective tissues, the main substance the body is made out of so every organ and system is affected to one degree or another. There’s no way I can possibly know enough medical information to fix stuff when it goes wrong without help, ….. but the very people that are supposed to help just don’t give a damn! It’s so frustrating and it makes me feel very lost.
Why do I just have to deal with stuff like trigeminal neuralgia, awful intestinal and stomach spasms (and spasms elsewhere), intense nausea, tachycardia, chest pains, inability to breathe properly, crippling headaches with visual disturbances (fluffy white lights around everything), tendonitis in many different sites, dermatitis, daily dislocations and pain without any help while if any ‘normal’ person went to the doctor about any of these they’d be more than happy to help them (and for many of them get rushed to A&E & fast-tracked in past the queue)….. it’s just not fair!
Being sick is rubbish. Sometimes I think I must have done something really bad in a past life for me to deserve to be punished like this. It totally sucks.