9 Things People with Psoriatic Arthritis Wish Others Knewby Tracy Davenport, Ph.D. Health Writer
Psoriatic arthritis affects as many as 37 million people worldwide, and yet it is still a disease that many do not understand. It can impact different people in a variety of ways, but many of us who are living with psoriatic arthritis share the following realities, thing we wish other people understood about the condition.
Our disease is not just a cosmetic problem
When most people hear the word psoriasis, they think of a problem with the skin. By definition, everyone with psoriatic arthritis does have psoriasis, which does impact the skin. However, psoriatic arthritis goes beyond the skin and can also cause us to be tired, have very swollen and tender joints, and experience a variety of other problems with our eyes and nails.
The weather impacts how we feel
Cold weather with no sun makes some people feel a little grumpy. It can make us feel hopeless and overwhelmed. And the fact that we feel worse when the weather is bad is not just our imagination. Multiple studies have shown that for most of us with psoriasis and psoriatic arthritis, winter makes things worse for us. We are sorry about all the complaining, but this time of year is no fun for many of us.
We dress for comfort
While many shop and dress for fashion, our main goal every day is to be as comfortable as possible so that we can be as productive as possible. For many of us living with psoriatic arthritis, especially if we are experiencing foot problems, it is all about choosing shoes that give our joints a little extra room and clothes that do not make us itch.
Some days are filled with worry about our disease
Especially during a flare up, our fear and worry can be all consuming. We also worry in between flare ups, knowing that there is probably one lurking on the horizon. We worry if we are taking the right medication. We worry if our condition will worsen as we age. And we wonder if our bodies will ever return to the place they were before our last flare up.
Our complicated skin routines are not just for beauty
Sometimes our dressers look like the makeup counters of a large department store. Let’s just say it’s complicated. There is lotion to put on after we shower, there is a different lotion that goes under our clothes, there is steroid crème for when we feel itchy, vitamin E oil for skin healing, and petroleum jelly in case we plan to go swimming. We do all of this, just to keep things from getting worse.
Sometimes I take a break from my treatment
I am the most routine person I know. However, when it comes to my psoriatic arthritis medications, sometimes I take a break. It can be for a day or sometimes longer. Taking a break is not always in my best interest, but sometimes I just pretend that I don’t need to take medicine. I want to be like all the Instagramers who just drink something green from a mason jar when they don’t feel well. Without fail, my symptoms come back and remind me that living my best life does involve taking medication.
This is not our grandmas’ arthritis
Psoriatic arthritis can develop gradually with mild symptoms or it can develop quickly and be severe. Unlike grandma’s arthritis, psoriatic arthritis can be very unpredictable. Our pain is not due to joint use over time. This is a disease of the immune system. One day we can be running a 5K and the next day we may not even be able to put on our running shoes.
There is treatment, but it can take time
While there is no cure, there is treatment for our condition. However, finding the right treatment can be difficult. Our disease can be an ever-changing process that takes patience from everyone involved. Sometimes we will feel frustrated and want treatment to be a much simpler process.
We are grateful for good medical care
Many times, our team of doctors are our lifeline. The good ones know how tricky this disease can be. When we have been strong at home, they let us cry in their office and they don’t judge us. They know we are not overreacting to the sudden symptoms. They know we are scared and that there are more questions than answers at this point.