My PsA story and the doctor who told me I was imagining pain at 12 years old

Hello,

I was diagnosed with psoriasis at the age of 10. I'm now 37 and after years of battling with psoriasis, fatigue, and joint pain. I have been given the diagnosis of PsA.

Psoriasis in childhood

As a child, it escalated very quickly. One day I was playing outside and the next I was covered head to toe in guttate and plaque psoriasis. The only visible clear skin I had was on parts of my face. I had to have hospitalised treatments which meant I had quite a lot of time off school. The treatments almost came as a relief because the relentless bullying I experienced was hard to handle. There were days I would hide out in the town library reading books instead of going to school. Try telling your parents at 16 that is where you are and having them believe you!

At the time there wasn't the same understanding surrounding it and I was the only person in school that I was aware of who had it. In my naivety even I wasn't sure if I was contagious... I, too, became repulsed by myself and it reached a point where I was too afraid to move or speak for fear of creating an avalanche of dead white skin below me. The number of times I would subtly try to brush any evidence away from my desk only to later find it attached to my jumper. I couldn't escape it and I built large walls as a result.

The emotional impact of psoriasis

Looking back I'm proud of myself though. I survived, found coping mechanisms and it's definitely shaped who I am but no one can prepare you for the emotional impact this disease will have on you, the hit it will have on your confidence, self-esteem, emotional wellbeing, and the physical pain it can bring. There is no cure and is a lifelong battle. Your teenage years are hard enough as it is and I spent the best part of it navigating this and learning to survive in my difference. Lucky for me I've always enjoyed my own company!

Developing more pain symptoms

A few years after my psoriasis diagnosis, I started to get foot pain in my left foot, particularly in one of my toes. It would swell up slightly and go down but sometimes the pain was great enough I couldn't sleep. My parents took me to the doctor (not thinking for one second it would be PsA) but simply to find out what was causing me pain. He essentially told me I was 'imagining' the pain and that perhaps it was in my head. This would be my first look into what it is to not only have a visible autoimmune disease but also an invisible one.

Fighting for a psoriatic arthritis diagnosis

Fancy telling a child with psoriasis and PsA in the family they are imagining it? Throughout the years the foot pain, tiredness, and psoriasis have pretty much always been there but it wasn't until a few years ago that I started to get pain in my left hand with obvious dactylitis. This started to affect my hand and foot to the point of not being able to bend either properly. Weirdly though, my psoriasis stayed pretty much under control with only small sections covering my body.

I had been to the doctors numerous times with my hand and foot issues and in the end, I had to basically self-diagnose and tell them I had PsA. One doctor even said, "it could be gout?" I despaired at the feedback I was getting but I did start to question my sanity and for a brief moment considered the possible thought that maybe this was just something else. I think they call that denial.

Experiences with psoraitic arthritis treatment

Sadly, I had to have emergency surgery for an ectopic pregnancy last year and since then I have had the worst PsA flare of my life. My whole body hurts and I am beyond exhausted. I love exercise and movement despite my restrictions so it has been hard. My hand and tendons have flared up to the point I can't bend them properly and I'm now on Prednisone to calm it. That pill with all its magic that loves to hate you... trying to stay away from the online forums surrounding this drug because trying not to cry is hard enough at the best of times!

I have reached the second level of my treatment plan and will spend the following months figuring out the right medication for my body. They are proposing Sulfasalazine and if that's ineffective biologics. It's been a battle but in some ways, it almost feels like the real battle has only just begun.

Feeling less alone with this community

I was really happy to find this platform because it makes me feel less alone. I always felt I had to deal with it by myself but I no longer want to. Thank you for existing. Even just writing this here has felt in part like healing.