Why It Is Wrong to Judge Someone with Psoriatic Arthritis by How They Look
“But you don’t look sick!” Whenever I hear those words, I want to respond with: “That’s because I am sick, not ugly!”
Looks are deceiving. It doesn’t matter if people feel like those words will make us feel better. It is never right to judge a person’s health status based upon appearance. And here is why:
Psoriatic arthritis is more than what you see
As I learned early on, a lack of visible symptoms does not mean that the disease is gone. When first diagnosed with psoriasis, it covered my body from head to toe. Soon I went from having a few breakouts to none.
I went so long between breakouts that I had put that diagnosis out of my mind. That was until I went to see a rheumatologist for fibromyalgia relief.
He took one look at my toenails and asked why I didn’t mention having psoriatic arthritis. I had no idea what he was talking about and said that I used to have psoriasis. He then explained that just because I had been rash-free for a year, it didn’t mean that I no longer had psoriasis. It was then I began testing for psoriatic arthritis.
More than just swollen joints...
The more I learned about psoriatic disease, the more I understood what was going on in my body. Knowing how it affects my immune system and all the different places - inside and outside my body - where psoriasis and PsA could create pain and problems helped me realize that they will be with me for life. Or until a cure is found.
Now that my psoriasis outbreaks are occurring more frequently, people have asked if psoriasis returned. But the truth is that it never went away. I just didn’t have any visible rashes.
Not every psoriatic arthritis patient will have swollen fingers or sausage toes. There are five different forms of PsA, and a patient can have one or more of them.
Life is a masquerade ball
Early on in my chronic life, I purposefully hid my emotions. Mostly because I wanted others to think of me as they did before, as a strong and independent person.
After a while, all of that hiding became exhausting. If that wasn't bad enough, the emotions I hid were beginning to boil over. Like a volcano, they released and spewed all over the place.
I was angry and snapping at everyone who crossed my path. If I wasn’t mad, I was sad and crying at the drop of a hat. Suppressing those emotions for so long turned me into someone I did not like.
I later learned the importance of processing and dealing with those emotions. But that doesn’t mean that I no longer hide them. Sometimes I need a break.
You only see the tip of the iceberg
The emotional toll psoriatic arthritis has on a person is exhausting. There are times I put my feelings of despair aside. To give my brain a break and free it to enjoy life for a few moments. Because as I have learned in the second decade of my chronic life, it is possible to be happy and in pain. Happy or depressed, I still have psoriatic arthritis.
My healthy friends and family often tell me that I make living with multiple chronic illnesses look easy. While not my intention, I do make life with severe pain look easy. But that is only because what those people have seen is the result of lots of hard work and many failed attempts.
It seems easy because, after 21 years, I know and accept my body’s needs, abilities, and limitations. It looks easy because they haven’t seen me fall flat on my face trying one modification after another until I figured out what worked best for my body and life.
Making the most of the good days
Another reason it looks easy is that when people do see me, it is typically on one of my better days. And if it isn’t, it is one of those days when I am determined to do what I want despite my pain. No matter what, they aren’t seeing me at my worst.
I hope that the more we discuss life with psoriatic arthritis, the less we will be judged by our looks.
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