Nobody has heard of my Arthritis

“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. That’s why I said psoriatic. Duh.
I’m sure most, if not all, of us with psoriatic arthritis have heard similar 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.  Imagine how much their minds would be blown if they knew it was spelt with a P!!

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 it is instead 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 old. Mine came out of the blue at the tender age of 27. Send your Grandma my regards, but I hope to avoid a hip placement for a few years yet.

 

“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. Left out because we can’t join the bigger club of rheumatoid. Feeling like a fraud in arthritis support groups online when you’re 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. That 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 our 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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7 thoughts on “Nobody has heard of my Arthritis

  1. myspiritfilledjourney says:

    May I joking your PsA club?! Painful day here! It must be the rain. My body can predict the weather before the local new station meteorologist! I had to take three days off work last week, worked there days through the weekend, and today, I needed a three hour nap to just not move. Without the map today,
    I wouldn’t be typing this! I hope and pray you have some relief soon!

    Like

  2. lifeasachronicpainwarrior says:

    I’d also like to join this PsA club! Like you, I’ve only ever met 1 person who also suffered from this disease. Its a very lonely and frustrating disease. Friends don’t understand and many that say they do try to compare your illness to other kinds of chronic illness. The only advice I can give after being diagnosed now for 5 years is to remain hopeful and strive for what you want in life. Then at the same time learn your body’s limits. My favorite quote is ” God gives his hardest battles to his toughest soldiers”.

    Like

  3. Nick'swildlife says:

    Thanks for sharing your story, I was diagnosed with Psoriatic Arthritis when I was 18 and I’m now 31.
    I get alot of the “I know how you feel” comments and “aren’t you a bit young to have arthritis” and it can be a little frustrating as like you said most people don’t really know about PsA.

    Like

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