Guest post by Artie Carden
Artie is a queer, nonbinary, disabled writer.
A couple of months ago they got in touch with me in response to a #ShitMyDoctorSays post on Instagram, to share this video about their experience of being disbelieved by their doctor when presenting with symptoms of vasculitis (an inflammation of the blood vessels).
Artie was eventually diagnosed with Takayasu’s arteritis – a rare form of vasculitis. They also have hypermobility syndrome and Crohn’s disease.
Artie’s given me permission to share their story as part of Hysterical Women’s focus on queer stories this week, for LGBTQ+ History Month.
I’ve also included an edited transcript below.
This story starts in roughly summer of 2018. I was nearly done at uni, it was my last semester, so I was trying to get a bit fitter. I had been seeing a rheumatologist up there and a physio [for hypermobility syndrome], and I was walking a bit more. I’d started the gym a little bit and I was trying to do exercise at home in my room.
One thing I’ve always been told for years is, because I don’t have enough strength in my core and lower back area, that I’m not capable of doing push-ups on the floor. I’ve always been told to do them against the wall or against a counter or something, so that I will still be building muscle in my arm areas and stuff, but without putting my back at risk. One day I noticed that my right arm hurt a lot more than my left when I was doing these pushups against the wall, and I didn’t really understand why.
Basically since May 2018, anytime I use my right arm, it hurts. Holding a cup of coffee that’s too big or too heavy, that hurts. It hurts trying to clean my glasses. I’ll use this pair to show you. This gripping motion sets this muscle on fire. Trying to wash myself, sets the muscles – particularly around the bend of my arm and the ones in my hand – on fire. Any exercises that involve moving my arm.
I’ve had this other particular symptom for years, at least 10 years already. But I noticed it again when I started doing an exercise class with my mum – if I went too hard, this artery here [indicating their neck] was killing me. It hurt so much I would always have to stop and I would be clutching my neck. It killed. I remember this also happened to me when I was 15, and any time I’ve done really aggressive cardio. I put it on the back burner for a while because I was focused on my Crohn’s diagnosis around that time, but it didn’t get any better.
When I got erythema nodosum (skin inflammation affecting subcutaneous fat) last summer, which was up in my legs, I also got it in my right arm. It was murder. Literally the worst pain I’ve felt besides packing the abscess wound I had. Those are the two worst pains I’ve ever felt in my life. The erythema nodosum was so painful I was screaming in pain. The rheumatologists at the hospital sent me for an MRI of my hand to see if there was anything there, like carpal tunnel. That came back fine, nothing wrong with it. I also went for a full spinal MRI to check if there were any pinched nerves anywhere else either – no, fine, all fine.
After the whole erythema nodosum fiasco, I was put under local rheumatology again in summer 2019, and they told me the scans had all come back fine. I was like, but what about my arm? Nobody’s been able to find out what was wrong with my arm yet. At this point in time, I didn’t really know what it could have been, except from this one thing people kept suggesting to me, thoracic outlet syndrome. It wasn’t it, but I had a lot of very similar symptoms. I brought that up to her, because I was desperate to find out what it was, but she said: “I doubt it, it’s very unlikely.” So I was like fine, if it’s unlikely, then what do you think it is?
She told me that I need to lose weight – which I’ve heard from multiple doctors across different specialties before – except she disguised it as “weight optimisation”. Bitch, I know what that means, don’t be rude! Do you think if I could just lose weight, I wouldn’t? In the appointment with her I was trying to push the fact there was something wrong with my arm and I wanted it to be looked into more. She kind of relented and sent me for nerve conduction tests, but that was it. She said, “well, sometimes with hypermobility, things just hurt.” I know – I’ve had this my whole life, but it does not feel like that. I can tell the difference between the pains.
I went to the nerve conduction – all fine, absolutely perfect – and I mentioned to her that I don’t have a pulse in the arm she was testing. She had a listen and noticed it too. This is something me and my GP had been talking about for a while – he always struggles to get my blood pressure on my right arm. Even big machines in hospitals can’t get my blood pressure from that arm. There was a moment as I was about to be put under for surgery for my abscess, where they’d put the blood pressure cuff on my right arm and it squeezed so tightly my arm went dead. It was lucky I managed to say something before I passed out, because I woke up with bruises.
In the meantime, the rheumatologist discharged me and my GP referred me to a vascular specialist, which is for veins and arteries. They had a mini ultrasound machine but they struggled to find my pulse with that. That man brought in the man above him, who came in to have a chat. Condescending man, but he got the job done. At least he was believing me. He basically said he didn’t think there was going to be anything on the scan, but he was going to do the scan and the blood test anyway to check.
I was referred to have a full arm ultrasound and a blood test. He also said what they’d generally advise is trying to keep my arm active and fight through the pain as much as I could. The thought process is that the more you make the arm move, the more blood is forced to pump through – so if I have got a narrowed artery or vein, the more blood that’s forced to pump through, the more it should widen is the theory. It doesn’t always work, but he basically advised me to do that for now. So that’s what I tried to do, because he also said that if you just stop using your arm, you lose muscle.
After the scan I got a call from the surgeon and he confirmed it was a type of vasculitis and it was arteritis, so it’s in an artery. He said inflammation has narrowed this area, which wasn’t a surprise because all my other health issues have been linked to inflammation. I had pleurisy in my left lung, my Crohn’s is inflammation and my hypermobility causes inflammation. The bit where I got really angry was when he said, “This is a rheumatology issue. Who’s your rheumatologist?” I said I don’t have one at the moment, the last one I saw discharged me because she didn’t think there was anything wrong with my arm. He’s going to send her a letter, so the woman who didn’t believe me is now being asked to take care of my medication. She full on didn’t believe me, she was just like “sometimes things hurt” and then blamed it on my weight. I love fatphobia and ableism in the medical care community.
Particularly with my Crohn’s, I’ve found that learning as much as I could was the best thing to do. I couldn’t just sit and not know stuff, even though there are lots of scary things linked. I have to prepare myself and I have to arm myself with knowledge because I have had a lot of shitty care from people. I spoke to a friend of mine recently, who said that the patients who are ‘a problem’ and speak out are often the patients that live longer because they know that something’s wrong, and so they fight for people to find out what it is. I don’t know what could have happened to me if it had gone untreated – it’s linked to strokes, it could have caused an aneurism. There are lots of very scary possibilities where, at 25, I could have just dropped dead one day.
[Next day]: I got a phone call from said rheumatologist, asking me how I was. I said to her that she’d chosen not to believe me and immediately discharged me, so I didn’t want to continue my care with her. My body was shaking, I really thought I might start crying as I was saying these things. She apologised quite a lot through this phone call and said they don’t often see vasculitis come through, even though it comes under their specialism.
But not only did she miss the diagnosis, she ignored her patient who knew there was something wrong. Instead of looking at what I was talking about as a separate issue, she chose to lump it under one of the many other things that’s wrong with me. She remembered that I was crying in that appointment, I was deeply depressed, I didn’t want to continue living because everything wrong with my health was just getting to me, along with the very poor medical care I was getting. I just didn’t see a light at the other end of the tunnel, and she didn’t give me any hope or take me seriously. She made a judgement based on what she saw on paper already, rather than what I was telling her.