Just the other morning a few days ago, darling hubby and I were sitting together in one of those rare moments of the morning when we were able to sit together and talk over a lovely mug of steaming coffee. He stretched his arms, pulling his head back and forth with a groan.
“What’s wrong?” I asked.
“Ugh. My body hurts so bad.” He responded with yet another groan.
“Ugh. So does mine. What’s wrong with you?” I wondered.
“I don’t like my pillow. What’s wrong with you?”
“My body is eating itself.” I responded.
Answering questions about psoriatic arthritis
When we talk to our loved ones about our disease, it can be very hard to really accurately describe what is going on and how it works. As mentioned in our conversation from above, it may not be exactly accurate response or technical at all, but it sure paints the right picture.
I can’t even begin to count how many times I’ve seen eyes glaze over as I attempt to answer their very kind question, “What is psoriatic arthritis?” Everytime I hear it, I’m still caught off guard and fumbling for the right words to explain psoriatic arthritis without overwhelming my friends with too many details. “My body is eating itself,” is certainly one of my favorites.
Like RA, but not
Most people have heard of rheumatoid arthritis, the close cousin of PsA. Sometimes, I just resort to a standard response of, “Like rheumatoid arthritis, but not exactly.” And leave it at that. Chances are, they have seen one of the many commercials on the television, even if they have no idea what RA actually it is.
Some interested friends ask me, “What is the difference between RA and PsA?” The technical answer may involve something about the joints affected or various blood tests involved. But even a simple answer like that is often met with feigned interest and quick movement to the next subject.
So what is the best way to address the seemingly simple question that most of our friends and family want to know, “What is psoriatic arthritis?”
Here are some of the great responses I have found to be the most effective and understandable:
“It is a form of autoimmune arthritis where my body attacks my own joints, muscles, organs and other soft tissues.”- Everything is fair game for PsA attack. Eyes, ears, and even your mouth can be on the psoriatic arthritis hit list. The immune system attacks, and it causes pain in that area.
“I’m tired all the time because my body is constantly fighting itself. It is like when you are tired from a cold or the flu when your body is trying to fight off an infection.”- Our bodies expend a remarkable amount of energy while on the attack of our joints and muscles. This is why we can take naps, binge watch Netflix all day, and still be tired. Sometimes, to my friends who have been pregnant, I’ll remind them what it was like during that first trimester when their body was working so hard and using so much energy to get that tiny baby growing. Women in the first trimester are exhausted, all of the time because their bodies are working hard. PsA is the same, our bodies are working hard all the time, however misguided it may be, it results in the same exhaustion.
“It is NOT osteoarthritis.”- For the love of the dear Lord above, please make this clear. If there is one objective to every conversation I have with someone who has never heard of PsA, I try to make it abundantly clear that osteoarthritis and psoriatic arthritis are no where near the same thing, except they both result in the destruction of joints. That’s it.
What’s your go-to response?
Everyone develops their own way to talk with friends and family about what psoriatic arthritis is. I believe it really helps to keep responses fairly simple. It is not right to expect empathy and understanding from loved ones who have no idea what psoriatic arthritis is or how it works. In my experience, a little bit of explaining can go a long way to help people better understand and spread awareness for psoriatic arthritis. What about you? How do you explain life with psoriatic arthritis?