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i had such a terrible experience last night with having to call 999 and i thought i would write a thread about it mostly to vent but also to inform people of why those with disabilities don’t always trust medical professionals (1/?)
for those that don’t know, i have ehlers danlos syndrome and due to the cold weather and some other factors, i have a really bad flare up of pain yesterday evening. this started a few days ago but by around 11pm last night it became unbearable. (2/?)
this is something that has happened many times before. i know what works for me in this situation and i know what doesn’t. so at around 1am we decided to call 999 as i physically couldn’t move and was in agony. (3/?)
the 999 operator then told us to call 111 to get further assistance; pretty much deciding for me that this wasn’t an emergency. my sister who i was on facetime to then tried to ring 111 but they refused to speak to her because she wasn’t “with” me. (4/?)
this meant i had to ring 111 in an absolute STATE and they asked me a tonne of questions. they then said a doctor would ring me back in a few HOURS. at this point i began to panic. i was in agony and the stress was only making it worse. (5/?)
i was subtly being told at every turn to basically suck it up as this wasn’t an emergency. luckily a doctor rang back within around 15 minutes and he could hear the absolute mess i was in and agreed it was best to send paramedics (FINALLY after probably around 90 minutes). (6/?)
the paramedics then arrived about and hour later and things only got worse. i was asked what usually helps in this situation which i then answered; this is something that has happened more times than i can count. (7/?)
after explaining what helps, i was greeted very “sweetly” with “well let’s try this first and see”. i replied saying this doesn’t usually help but they persisted and i wasn’t in the headspace to be assertive. (8/?)
i went along with the course of action they suggested and it BARELY touched the pain i was in. when they asked how i was doing i started crying as all 3 paramedics just started at me. one of them then said “well you seem better than when we arrived” which was just not true (9/?)
by this point i was in agony and i was exhausted; i could tell they weren’t going to help in the way i needed for some reason so i just lied and told them my pain had settled so that they would leave. (10/?)
this whole experience has left me feeling like a burden and someone who is just over exaggerating when in reality i couldn’t even get to the toilet due to pain. (11/?)
this whole thread is basically just to highlight exactly why i, and others with disabilities, don’t always trust health professionals. not being heard is a horrendous feeling. (12/?)
i understand the NHS is under enormous pressure right now and this only made me feel worse, but this pandemic doesn’t mean those with health problems other than covid have suddenly disappeared? (13/?)
anyway i’m going back to sleep now but i hope that this doesn’t happen again because my self worth cant take it. (14/14)
