Combatting Those Side-Eyes
If you have psoriatic arthritis, you may have heard it referred to as an invisible illness. You look fine on the outside, but few understand what is truly going on inside. To those not dealing with the symptoms of psoriatic arthritis first-hand, you may come off as lazy or whiny. And sometimes, this can even lead some to give side-eyes and whisperings of disapproval. These unwelcomed reactions are not only are rude, but also hurtful.
Fighting the ‘Mama Bear’ instinct
My son was 8 years old, and we were out shopping. He was in a horrible psoriatic arthritis flare, and it was just before Halloween. All he wanted was to find the perfect costume. At least that’s what his heart wanted. His body disagreed.
Just like adults with psoriatic arthritis, children with the disease can also have difficulty walking when they’re in a flare. For my son, this means his hips, back, knees, ankles and the soles of his feet ache. Walking the store on this particular day wasn’t an option for him.
So, what’s a parent to do? He’s too big for a stroller. All of the wheelchairs were already being used. There’s no way I would trust him with an electric cart at his age. So, I scooped him up and put him in the back of a shopping cart.
I was shocked at the number of disgusted glances from other shoppers, not to mention what they were saying under their breath. They thought I was babying him, and he was a spoiled brat who had mom wrapped around his little finger.
After taking a deep breath and calming my mama bear instincts to lash out and protect her child from nasty comments at all costs, I made it public why he was in the back of a shopping cart. I started asking my son in a louder voice than normal if his swollen knees were still hurting and how achy his back was. I made comments to him about how psoriatic arthritis stinks and that one day there will be a cure, and he won’t be in pain anymore.
The looks of disgust quickly turned to looks of compassion. At least two shoppers walking by mentioned that they didn’t know children could have arthritis. It sparked a conversation that allowed for understanding and educating them about his invisible illness.
No matter how old you are, if you have psoriatic arthritis, chances are you’ve experienced these same stares. I get these nasty looks when I use a handicap parking spot as a last resort, even though a doctor and my state say the need is legit, and I have a placard.
My number one suggestion to combat these side-eyes and whispers is to be proactive and take the opportunity to enlighten those sending out the vibes of disapproval.
Whenever my son or I are having a bad day with psoriatic arthritis and need to be out and about around town, we don T-shirts that show we are psoriatic arthritis fighters. We try to make our illness visible to others. We put it out there for all to see, front and center. We even use car magnets that show disease awareness to help when using a handicap parking spot.
Some of my favorite T-shirts I’ve seen: “Keep calm and raise awareness for autoimmune disease,” “My immune system attacks itself. What does yours do?” and “I will fight against psoriatic arthritis. While I wish the people around me could understand it, I wouldn’t wish this on anyone.” There are even great ones for kids, like “Kids get arthritis too.”
I always try to give people the benefit of the doubt. Call me naïve, but I really do believe most people are nice and helpful, and the stares we get are simply because people don’t understand that invisible illness is a part of us every day. By wearing awareness shirts or using car magnet, the negativity we receive is usually low and psoriatic awareness gets a bump. In the end, I call that a win.