Incomplete Information About Psoriatic Arthritis
Last updated: March 2022
Even with the influx of information about psoriatic disease, there remains a difference between what people think or assume about psoriatic arthritis and its reality.
This isn't just limited to laymen. In my experience, there seem to be incomplete information and knowledge gaps between what even doctors know and what we experience.
A false reality
I can't be just me. In addition to family and friends, we've noticed a major uptick in the frequency of medication commercials lately. Helpful or hurtful? Well, what my loved ones see in these commercials is quite different than my own reality.
My closest people are seeing advertisements for various DMARDs and biologics that show people fishing, golfing, and laughing.
Inevitably they will eventually say, “Oh look! Did you see this? There is a medicine available to make you ‘better.’ Have you tried that?” While these comments are usually well-meaning, I love that they identified the name of my disease and the medicine correctly. I can’t seem to help being upset with the perceptions that are created.
This is because medications don’t make us “better.” Rather, as a general rule, they attempt to keep us from getting worse. I know we don’t like to acknowledge that very often, and in some respects, it is even more difficult for friends and family to accept, but it is the reality.
Living with a chronic and progressive disease
I am grateful for what seems to be the ever-expanding treatments options that promise to slow down the progression of this disease. I can't help but think, because of that, many people jump to the wrong conclusion that we can take medicine, get better, and be fine again.
When people here arthritis, they don't understand PsA's uniqueness. How many times have I had to explain to people that it isn’t one of the more commonly known forms of arthritis, such as osteoarthritis. No offense to folks with osteo, I know it has its own kind of pain.
“Yeah, my grandma has that too. She just takes some aspirin.” or the inevitable, “Oh, you’re too young for that!” Go ahead and pop in another eye roll here, friends. I know we say it a lot, but for some unknown reason, the most known misconception still lingers like that smell you get from those same old people's arthritis cream.
On another hand, have you ever looked at some of the “general health” websites about psoriatic arthritis? Some can’t help but perpetuate the incomplete knowledge of psoriatic arthritis. Inevitably, they mention simply swollen knuckles with a picture of someone’s wrinkly, old, gnarled hand. I swear it is always the same picture.
This disease is so much more
I guess I’ll concede that at its most basic form, swollen joints and digits can be a large part of PsA. And of course, we know the reality is so much more. While it is one of the common denominators, it doesn’t necessarily mean that it is the only one, the most prominent one, or even the first symptom you might experience.
In my experience, if you ask 10 people to talk about their first experiences with psoriatic arthritis, more than half won’t list sausage fingers or a swollen knuckle as their first symptom. Rather it will fall somewhere in the top 5 symptoms and in many cases, and not even necessarily the worst symptom.
If you could rename PsA and fill in some of the knowledge gaps and misinformation out there, what would you say? And also out of curiosity, what would you say was your first symptom?
Has PsA changed how you think about sex and intimacy?
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