Living with psoriatic arthritis (PsA) hurts, but at times what hurts the most are the comments filled with stigma and misconceptions from those around us. Words from some who mean well and words from others who are just being mean. Some don’t realize what they are saying is irritating, thus it’s our job to let them know. Here are 6 things you do not want to say to someone living with psoriatic disease, accompanied with what you can say instead.
“You don’t look sick”
At times it seems people only believe in what they can see. Those around us can see our plaques of psoriasis, but the joint pain associated with PsA is a different story. Pain of the joints can’t necessarily be seen unless you have a progressive form of arthritis which can cause deformity of the joints. Long before the deformity, there is pain which people can’t see. Many people around us will assume because those of us with PsA look ok that we are lying about the extent of the pain we may feel when our joints are flared. Saying a person doesn’t look sick, may seem like a compliment but for someone us it feels as though you are trying to down play our pain or make it seem like we are over exaggerating.
What you could say: I would have never known the pain you are dealing with if you hadn’t told me. Thanks for sharing that with me. Is there anything I can do to help you during this flare?
“You are always tired” or “You are being lazy”
Fatigue is a misunderstood component of having an autoimmune disease. Research is still being done, but it is said that someone with the inflammation of the body causes the body to feel tired. To some extent, the fatigue can often times be uncontrollable. At times it seems as though no matter how much sleep I get I’m still tired and can always use a nap. Some people mistake this for laziness. I’m a firm believer that diet and exercise can help to a certain extent, but if someone is having a PsA flare it can be very hard for them to do exercises that don’t cause additional pain.
What you could say: How are you feeling? Is there anything I can do to help you feel better?
“You need to lose weight, maybe your joint pain wouldn’t be as bad”
Obesity is related to autoimmune diseases, but it’s not as simple as losing a few extra pounds. PsA is an caused by an over-reactive immune system that causes inflammation to the skin and the joints. As stated above it’s important to remember that PsA not only effects the skin, but also the joints. For some people it can be very hard to workout. People who are dealing with obesity and PsA also face a greater risk of depression which can also make it hard to want to exercise. Please keep these thoughts in mind before saying the above statements.
What you could say: What has the doctor suggested to help with your pain, and how can I help you achieve those goals?
“You should go natural, I know someone who used (insert product here) and it cleared them up.
There is no one size fits all to this disease. What may work for one person may not work for the next. Please gauge your relationship and how receptive one is to your advice. Some people just don’t want to hear it because they feel as though they have tried everything. Natural treatments are also tricky because it takes a lot of work and discipline that a lot of people just don’t have, it’s hard.
What you could say: What have you used in the past? What seems to work? What would you be willing to try? Are you open to suggestions, I know a few people with PsA.
“You are too young to be in that much pain.”
Often times people associate pain with the elderly. Some have a habit of not taking seriously the pain that young people speak describe. According to the National Psoriasis Foundation, the disease commonly appears for people between ages 30-50, but younger people can be affected including children.
What you could say: I’m so sorry you are having such a hard time right now, is there anything you need at the moment that would help you feel better?
“At least you get a day off”
Some of us living with PsA have pain so severe that at times we have to take off from work or school. This is by no means is a vacation for us, it’s not fun. At times too many days off from work can seem like we are helpless and a burden.
What you could say: I’m sorry you can’t go to work/school today. Is there anything I can do to help you while you are at home?
What are some things people have said to you about your PsA that you feel were inappropriate?