Our friends and family members mean well. They want to be helpful and provide support to patients that are suffering in pain, living with chronic illnesses, or experiencing health problems. But, they don’t always say the right things.
“What is wrong with you all the time?” they ask. “You are always sick.”
I have been living with psoriasis for more than 50 years and psoriatic arthritis for 25 years. Between 20 to 40 percent of people suffering from psoriasis have or could have psoriatic arthritis at some point in their lives. Only people suffering from this type of pain can truly understand the toll it takes on your mind and body.
Someone who doesn’t suffer from psoriasis and especially psoriatic arthritis will never understand what we go through. Flare-ups, stiffness, inflammation, tenderness, fatigue and swelling are just a few of the perks of psoriatic arthritis. I want to tell them but because of the complexity I simply say I’m in pain or I don’t feel well.
Generally, people mean well when they ask but their words don’t always indicate the understanding someone with psoriasis is looking for. If you want to offer support, think before you speak, show a little sensitivity and try not to make assumptions.
I’ve compiled a list of things you should never say to someone living with psoriatic arthritis. All of these things have been said to me in the past. Use this list to communicate better with someone suffering with psoriatic arthritis.
No, it isn’t. It’s just crazy to tell a person suffering in severe pain that they are making it up. Psoriatic arthritis has been compared to rheumatoid arthritis and that, my friends, is extremely painful. When people see someone in constant pain or displeasure, they may have a tendency to think that we are hypochondriacs. But, psoriatic arthritis is every bit as painful as someone suffering says it is. When they tell you they don’t feel well, believe them.
There is no known cure for psoriatic arthritis. While certain foods may help with inflammation, there is not enough evidence to prove one way or another. Everyone wants to suggest diet restrictions: go vegan, gluten-free or even give up sugar. Another favorite people often say, “Maybe you should eat healthier.” The tone in that suggestion is that I eat junk all day, hence I have arthritic pain. More craziness and it’s really annoying to someone who is truly suffering in pain.
Just because someone looks healthy on the outside, doesn’t mean we’re not suffering in pain internally. This is a prime example of people making assumptions. I suffer from psoriatic arthritis and people tell me I look young. I want to tell them I feel 100 years old.
Yes. Let me answer again, yes. With psoriasis and psoriatic arthritis, you must take medication to manage pain, have a decent quality of life and keep from going crazy. Sometimes one medication is enough for certain people, while others need to try different combinations until something works. Also, medicine is expensive, and it’s not always easy to access without the right insurance.
There’s a big difference with regular arthritis and psoriatic arthritis. People often want to compare their pain to someone with psoriatic pain and it’s worlds apart. It’s not your common household arthritis, the kind you get as you grow older. My type of arthritis is debilitating to the core.
This statement is usually posed by a new person who you just met, a co-worker or a family member who won’t take the time to do some research on why you’re in pain. Things can change in the blink of an eye. One minute you’re fine, and the next you’re curled up in the fetal position begging for relief. What you need to understand is every day is different.
My family has told me on many occasions to stop being so lazy. They just don’t understand. Many people mistake fatigue for laziness but psoriatic arthritis fatigue is very real. I am sure all psoriatic arthritis sufferers (myself included) would love to trade places with someone who doesn’t suffer for one day and shop till I drop or go hiking. If we could have a psoriasis and arthritic-free life, we would defiantly not sit in the house. Sometimes sitting on the couch and watching a movie is a challenge.
No, you don’t have a clue how I feel. Do you have psoriasis and better yet psoriatic arthritis? Probably the most annoying thing people say is that they know how we feel, when in actuality they are clueless. Because if they did know how we felt, they would never make that statement. Again, this is not like a headache.
Nope, sorry to say — no matter how much you exercise, you won’t cure psoriatic arthritis. Yes, exercising can help in some circumstances but so can rest. People suffering from this disease have to be careful about what they do and how they far they push their body when exercising.
Again, this is not the standard type of arthritis and though rare, psoriatic arthritis can occur in children but typically starts in a persons 20s. This arthritis does not develop through aging.