What It's Like Having a Type of Arthritis People Haven't Heard of
“You have what? Sorry-attic arthritis? Don’t you mean rheumatoid?”
Well, good meaning but misguided work colleague – no, I do not mean I have rheumatoid arthritis.
I’m sure most of us with psoriatic arthritis (PSA) have heard similar comments when explaining to people what our condition is.
We’ve all seen the blank stares looking back at us from people who don’t know what psoriatic means. The confused look when they try to get their heads around the fact that there are more types of arthritis than the two most famous ones, rheumatoid and osteoarthritis.
Granted, it’s not the easiest to explain. Even now, 10 months after I first developed PSA, I can’t answer the question of, “What is it?” much better than saying, “Very annoying and very painful.”
It is usually, but not always, an unwanted side effect of having another stubborn auto-immune disease, psoriasis. I find sometimes the best way to describe it is to say that it’s like the psoriasis on my skin (at which point I roll up my sleeve and show them my red and scaly arm), but instead it is damaging my joints through inflammation. It makes my joints swell so rapidly and to such a degree I often look like a misshapen version of the Hulk. They usually get the idea.
“You have arthritis? My Grandma has arthritis.”
Whilst I’m really sorry to hear that your grandma has arthritis, it’s unlikely to be the same kind. It’s not impossible, but it’s unlikely. Mine hasn’t been caused by years of wear and tear, nor from generally getting a bit older. Mine came out of the blue at the tender age of 27.
“I slept funny last night and have hurt my shoulder, I know how you feel.”
Thanks for the empathy, but sore bones aren’t just what I feel. Psoriatic arthritis also has a lot of hidden symptoms that people can’t see, and sometimes it’s easier to not mention them to people at all. For example, all 10 of my toenails have become riddled with psoriasis.
They have lifted off of the nail bed, they’re thick and crumbly and very very painful. So, I’m having each of them permanently removed. It’s grim, but necessary. The second toe on my left foot has fused in a bent position and will require surgery. It has no movement and means that I can only wear comfy sneakers with enough room to accommodate it.
Another hidden symptom is that the two toes next to the fused claw toe are starting to bend over each other towards my big toe, which will also require surgery. Who knew that something that is generally thought to just make joints hurt could cause such disfigurement and devastation?
I’m sure many of you also suffer from the horror of plantar fasciitis, and also have to use orthopedic insoles. Psoriatic arthritis is so much more than painful joints. Don’t even get me started on the fatigue.
Psoriatic arthritis can be a lonely condition to have. Those with PSA often feel left out because we can’t join the bigger club of rheumatoid. Sometimes I’m left feeling like a fraud in arthritis support groups online when I’m the only one with PSA. Meeting people who have arthritis or who have someone very close to them suffering from it, but it isn’t PSA, and they’ve never heard of it.
I’ve very briefly met one other person with it and it was a bizarrely happy moment. I’m not alone! Others like me exist! I’m not making it all up.
But maybe that’s the beauty of having PSA. There aren’t that many of us. We’re VIPs, specially selected to join the club. Sure, it’s not a club any of us would want to join, but membership is free so we might as well join and make the most of it. Chances are we’re the only person with PSA that a lot of people in our lives are ever likely to meet. It’s our duty to stick together to teach the world about PSA and banish those blank confused stares forever.
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