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Ok this is a thread of something that happened to me last year. I don’t know if it’s medical negligence, but it’s definitely ableism and a great example of how chronic illness is treated. Feel free to share it.
CW for descriptions/pics of hives.
CW for descriptions/pics of hives.
I started getting small hives on my legs in May 2019. I went to the GP and she said they were insect bites. I was very itchy, and some were breaking open and scabbing.
I stripped and disinfected my bed, closed my window, and they kept coming. They got bigger. The doctor said if I REALLY hadn’t changed anything (as if I was stubbornly washing my clothes with something I was allergic to) it was just hives. They put me on new antihistamines.
I took them for as long as they said, and the hives kept getting worse. They spread to my neck, my feet, and my fingers swelled up. They left behind pinprick marks, bruises, and discoloured patches. They hurt deep under the skin. I was given more antihistamines.
At this point I was struggling to concentrate on anything. I was so itchy, I couldn’t sleep and had no appetite. When the antihistamines didn’t work after a week, I went back like they told me to.
I was given a short course of prednisone, supposedly to calm it all down. It was amazing! My skin cleared in hours! I could sleep, I could look after myself!
A week later the steroids ran out. I tapered over two days, like I was told to, and almost immediately after?
This was a month in. I was exhausted. I felt defeated. I went back to the doctors. They weren’t allowed to give me more steroids. I asked for a dermatology referral. The hives kept getting worse. They were on my face, my joints, and I could no longer wear underwear.
My eyes are not closed. They are swollen shut.
I asked for steroids, a low dose, to keep it manageable. I was refused. Other meds were not an option. I was so ill by this point that I was struggling to eat even one bite of food.
My memory is hazy but I believe I asked for a dermatology referral but was told it hadn’t lasted long enough, 4 weeks in.
I went to stay with my mum, out of necessity. I needed to be looked after because I was unable to care for myself. The picture of my hand is how swollen my fingers were while travelling. I had to carry a damp flannel to ease the itching. I was delirious.
While at my mums, it continued to escalate. Hives would start, then grow into huge plates of angry swollen skin, until they eventually faded to a bruise or a red mark. I kept taking the antihistamines. I had to be cajoled to eat each bite of food.
Then it got really bad. Large parts of my body became rock hard, red, swollen, with a deep deep itch and skin that felt sunburnt. The entirety of my thighs, my neck, and most of my sides. My lips and eyes swelled. I had to go to A&E.
They didn’t even triage me. They took me in immediately and gave me another course of prednisone. They told me to ask my GP for an urgent referral to dermatology.
The steroids worked almost immediately. However, the hives kept coming back just before the next dose. I decided to taper this course much more slowly, to give my body a change to adjust.
I did what the A&E doctor said. I asked my GP for an urgent referral, showed them these pictures, and told them what had happened. This was the result.
Key points here: ‘on holiday’. I explained I had had to stay with my mum because of how ill I was. I was not on holiday and they knew that. I cannot think of any reason they would say that except that they were not taking me seriously.
‘Very emotional young lady’. I cannot overstate how patronising this is. I hope I’ve shown just how unbelievably difficult my life was at that moment. I cried in the GP office once in this entire time.
‘Repeatedly on the phone or at surgery’. I called or went in only when they had asked me to, to let them know of how well meds had worked.
This letter is so egregiously rude and condescending. This was read by a consultant before they ever met me. This could have damaged my care by giving the impression that I was just ‘emotional’.
All I had done was advocate for proper care. I had done everything they asked me to, and i had tried my best to get my body what it needed through debilitating fatigue and pain and delirium.
Eventually, from being on 4 fexofenadine and tapering the prednisone as slowly as possible, and maybe even by the grace of god, they eased. By the time I saw the consultant, it was under control, although I am still on 3 fexofenadine a day and if I miss one hives pop up.
I hope this illustrates something. I’m not sure what. Maybe how hard we have to fight to get proper appropriate care. How difficult it is to be taken seriously. How chronic illness often is used to say, well, maybe it’s just that.
This isn’t even an isolated incident. And I wasn’t ever planning to share this story or this letter or these pictures of my body. But I need people to know that this is what it’s like, fighting to be looked after. This is what it’s like to be chronically ill.
