I have psoriatic arthritis. I’ve had it for a long time. This is what it’s like.
Psoriatic arthritis is something you have a genetic predisposition towards. You’re not born with it: You’re born with a chance for it to get triggered.
Many things can be the trigger, but for me it was stress.
In 2012, I started trying to navigate through the healthcare system (for the second time) to try to get referred to a gender clinic (with the hope of starting hormones). Unfortunately, it was very difficult and a pretty nasty experience all round. I’ve written about this at length.
It put me through a lot of stress, and at the same time, my scalp started turning red. A red line developed at the top of my forehead, and I didn’t know why.
At the end of that year, I went to a music festival. As you might expect, it involved a lot of cheering and dancing and clapping.
After a couple days of clapping, my wrists started to hurt. They hurt a lot, and I ended up missing a lot of the festival, just lying in my tent, trying to make the pain go away.
When it calmed down, I “fake-clapped” instead.
When I got back to uni, my wrists were still hurting. So I went back to the same doctor that refused to refer me to the gender clinic, and I told him about my painful wrists.
The same doctor that refused to refer me to the gender clinic decided that my painful wrists must be because of carpal tunnel syndrome, and the same doctor that refused to refer me to the gender clinic injected steroids into my wrists right there and then.
It helped for a while, but before long, the pain came back, and it became much worse.
At the same time, my red scalp became more and more red. It became swollen, and it started to scab. It scabbed a lot.
Bits of scabby skin started to continually fall off, and it was very embarrassing. It looked like some sort of chunky dandruff, and there was nothing I could do. People sometimes thought I had bits of crisp stuck in my hair.
Washing didn’t help. The scabby skin came back too fast. It looked like a hygiene problem, but it wasn’t, so I didn’t like to talk about it. I tried to hide it instead.
Hairdressers are very used to seeing psoriasis, and my hairdresser told me:
“Oh yeah, that’s psoriasis. You can get help for it if you go see your doctor.”
I didn’t want to go back to the same doctor that refused to refer me to the gender clinic, so I switched doctors and went to a different one, who told me that I had psoriasis and I should use T-Gel in my hair when I shower. It’s some tar-like shampoo stuff that’s supposed to get rid of the scabbing.
And it did help! It reduced the scabbing enough that it was no longer disastrous, and it became something I could manage.
But still, throughout the years, my head always stayed red, and scabby skin (NOT DANDRUFF) always fell out. Adults were too polite to ever mention it, but children are helpful because they tell you the truth.
“Mr Wilson! Your head is so red. Does it hurt?”
“Oh yes, no, it doesn’t hurt. It’s all okay.”
Like I said, psoriatic arthritis can get triggered by stress. And it became a LOT worse when there was some bad news in my immediate family.
You can look after your mental health all you want, as best as you can, and I think I did, but you can’t stop the stress from going through your body.
My redness got a lot worse, and the scabbing did too. It became impossible to manage. It felt out of control. No amount of T-Gel could stop it, and I became extremely self-conscious about it. The children at school became even more aware of it too.
“Oh no, Mr Wilson! Go look in the mirror! There’s something on your head!”
“Yes, no, I mean yes. But no it’s fine.”
It had spread to the back of my ears at that point, but the more impactful change was in my joints. My hands were killing me constantly. Opening doors and cupboards and containers became difficult. I dosed up on as much ibuprofen as I could, and that helped a little bit.
“No, I mean— it’s— I’m fine.”
The worst pain was in my legs. My feet became so sore that it hurt to step down on them, and standing and walking became difficult.
My little five minute walk from the bus station to the classroom became longer, ten minutes, fifteen minutes, as I limped more and more.
At this point, it wasn’t just the children saying something. Politeness subsided and my colleagues started commenting as well.
“Luke, are you okay? You’re limping.”
Funnily enough, I didn’t suspect a thing. I put it down to a combination of being tall, or too much bad posture from working with small children. Or maybe I just pulled a muscle, or fractured something, and it would get better by itself. That’s what I thought.
Of course, I was wrong and it just got worse. I hobbled along, and my fingers turned red. They became swollen! They were swollen up and expanding, but I tolerated it, for some stupid reason.
I think I thought I had too much on my plate already, with work and life and all the rest.
One day, I was horrified to find a small patch of psoriasis on my arm.
Not on my head, no! On my arm. For the first time, it had escaped! It had spread to somewhere else on my body.
I panicked and I imagined all the worst case scenarios of scabby skin spreading all over me, my arms, my chest, my face!?
That was it. I needed to go get this fixed.
I booked another appointment with my GP and I tried to express to him how bad my skin was, on my head, and elsewhere.
So he booked me a blood test (my first ever blood test) and I did a blood test.
Okay okay okay when I was a little kid, I accidentally stepped on a pin with my bare foot and it got stuck in my foot and lots of blood came out and it had to be pulled out with tools from the toolbox. And ever since then, I’ve held a deeply irrational fear of needles.
You might think I’m a baby or something, but I was terrified of that blood test. I had to sit down for a while beforehand to calm myself down, to breathe deeply, to stop myself fainting or freaking out. And I told the nurse how nervous I was but I don’t think I needed to, because he could see it on my face.
Of course, nurses are fantastic at dealing with nervous wrecks like me (they’ve done it hundreds and hundreds of times), and he immediately put me at ease, asking about my day, and where I work, what I’m doing later, where I live, what I saw on TV, what music I— what I ate for breakfast— and he asked the questions at such speed that I didn’t get a chance to even get my— or think about the— or anything at all. It completely distracted me, and before I knew it, it was over.
Later that week, the tests came back, and they told me:
“There’s nothing wrong with you. The tests came back fine. You’re all okay.”
So I went back to the doctor and I told them that no, no, it’s not fine, it hurts, and I’m not okay.
“I’m definitely not okay.”
Continue to part one.