8 Things Never to Say to Someone With PsAby Amy Marturana Winderl Health Writer
Swollen and tender joints, fingers, and toes. Morning stiffness. Painful muscles and tendons. Fatigue. The most common symptoms of psoriatic arthritis (PsA)—an autoimmune disorder where the body mistakenly attacks its own tissues—are mostly invisible to the people in your life. Flaky skin patches are what usually do go noticed (and often not in a good way). This is why PsA can be one of the most misunderstood illnesses, says Rebecca Haberman, M.D., a rheumatologist at NYU Langone in NYC, making it easy for others to misjudge your symptoms.
Ignorance Can Lead to Insensitivity
If you have PsA, you’ve likely already (painfully) discovered how well-meaning friends and family members (who maybe should know better) can make wrong-headed assumptions about your condition—and vocalize them to you!—even when they have no idea what they’re talking about. It’s not a common disorder, Dr. Haberman explains, so it can be difficult for others to understand what you are experiencing. This can lead to insensitive comments—potentially worsening negative self-esteem and anxiety in a disorder where a negative mental health impact is often an issue, she adds.
"You're Too Young to Have Arthritis."
When it comes to unwanted commentary, this has to be a frequent offender. While osteoarthritis (a.k.a. “regular” arthritis) is usually caused by wear and tear on the joints and tends to develop later in life, PsA usually appears between the ages of 30 to 50, according to the American College of Rheumatology. “It can be diagnosed even when someone is a child or teenager, and a lot of patients are diagnosed in their 20s and 30s,” Dr. Haberman says. She adds that most people with PsA have psoriasis for five to 10 years before they develop arthritis.
"But you look fantastic!"
Not everyone with PsA looks sick. In fact, “someone can have very active disease without other people being able to tell right away,” says Dr. Haberman. That’s especially true if the psoriasis isn’t actively flared, but the arthritis is. Remember, PsA causes inflammation that isn’t necessarily visible from the outside—especially when it’s in more “hidden” areas, like the spot where a muscle inserts into the bone, says Dr. Haberman. An arthritic knee may be clearly swollen; other tissues in the body can be just as painful but visually undetectable.
"Have You Tried The X Diet?"
If only it really was as easy as eliminating processed foods, or going vegetarian. Clasina Field, co-executive director of Ben’s Friends, a network of support communities for people with rare and chronic illnesses, says that this comment makes her want to scream. “If it were as simple as switching my diet, do you think I'd be like this? It's belittling and it's patronizing.” While focusing on an anti-inflammatory diet can play a role in treating inflammatory diseases like PsA, it’s not a magical cure on its own.
"I Know Exactly How You Feel."
A lot of people may try to express empathy or relate, but hearing PsA be compared to other common aches and pains can be frustrating for people with the illness. “Generally, very few people ‘get it,’” says Field. “Coping with a chronic, rare disease is a unique experience that often comes with isolation and desperation—so, please, don’t insist you ‘know exactly how I feel.” For many people with PsA, the disease impacts all aspects of life—leading to chronic energy loss, professional uncertainty, and, sometimes, financial strain. That experience is impossible to fully understand if you haven’t lived it.
"You're Just Being Lazy."
Thanks to body-wide inflammation, PsA can cause serious fatigue, says Dr. Haberman—which others can mistake for lack of initiative. People with PsA also have higher rates of anxiety and depression, diabetes, and cardiovascular disease, she adds. “PsA comes with many other medical problems that may not be easily visible.” Jennifer Pellegrin, 37, of Jurupa Valley, CA, says the invisibility of her PsA symptoms can make her coping strategies—like taking extra time to get ready, or doing stretches before getting out of bed—come across as laziness rather than self-care.
"Yikes. That Looks Painful."
When it’s uncontrolled, PsA can cause immense pain, restrict movement, and even become disabling. But pointing out that someone looks like they have an illness or disability just puts them in the uncomfortable position of having to explain themselves—all the time. Shirley Wallace, 49, of Pulaski, NY, hears this comment often because her hands have been deformed as a result of her PsA. It’s frustrating, she says, because it makes her feel like she is constantly talking about her condition and why she looks a certain way to other people. And who wants that?
"I Wish I Could Lie Around All Day, Too."
You’d be hard-pressed to find someone with PsA who wants to feel held back because of their fatigue or pain. Most people wish they could jump up and go about daily life without reservation, but that’s not always possible. “I wish I had the energy that some of those my age do, yet my body thinks otherwise,” Pellegrin says. Just because someone doesn’t complain or act like they are in pain doesn’t mean that they’re not—many people with PsA say that they’ve just gotten so good at living with discomfort, other people are clueless about what they’re truly experiencing.
"You Just Need More Sleep/Sunshine/Aleve."
Trust us: Sleep, fresh air, sunshine, and physical activity aren’t quick fixes for PsA or the related fatigue and pain. “The good news is, right now we have a lot of good treatments for PsA,” says Dr. Haberman. Most patients have to go through a trial-and-error period to figure out which specific treatments are best for them, Dr. Haberman adds, but there are lots of options. Still, it's not as simple as “sleep more” or “go spend some time outside”—if it were, you can bet everyone with PsA would be doing it.
It's Up to You How Much You Want to Say
“Most of the time, the person's question or comment is innocent—they have no idea they’re prying,” says Field, who confesses she fantasizes about handing out business cards that simply read: “I HAVE PSORIATIC ARTHROPATHY,” rather than “arthritis,” shutting down further inquiry (without saying a word) while pre-empting all “Hey, I have arthritis, too!” comments in one fell swoop. Still, “If it’s a friend or family member, educating them a bit might be worthwhile,” she adds, although, ultimately, it’s up to you.