What Not to Say to Someone With Psoriatic Arthritis
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If you’re living with symptoms of psoriatic arthritis (PsA), you may be all too familiar with how the pain and fatigue can impact your life.
But the hurt that comes from other people’s uninformed remarks can also be hard to bear. Because while friends, family members, and strangers may mean well, they often don’t know what to say to someone living with a chronic illness — particularly one that can be as complicated as psoriatic arthritis.
“Not everyone understands the magnitude of having this disease,” says Diane Talbert, a patient advocate who has had psoriatic arthritis for decades. “They’ll make you feel like an outsider, even though there are millions of us with this illness.”
It’s important to keep in mind, however, that an awkward or hurtful exchange can also be an opportunity to educate others. Below, nine things you may hear that might make you cringe, along with some suggestions about what to say in return, and a few comments that are actually welcome.
Consider sharing this list with friends and family, so they can be as supportive as they mean to be.
RELATED: 15 Things You Only Understand if You Have Psoriatic Arthritis
1. ‘You Don’t Seem Sick’
People won’t always be able to tell that you’re experiencing symptoms of psoriatic arthritis like stiffness, inflammation, tenderness, swelling, itchiness, and fatigue — they may just think you’re having a bad day. But just because others can’t always see the symptoms of psoriatic arthritis, that doesn’t mean they aren’t there.
“It is very difficult to have an invisible disease, and psoriatic arthritis can take a toll on people’s ability to function normally on a day to day basis. When there are no visible signs, people make judgments,” says Rosalyn George, MD, a board-certified dermatologist in private practice in Wilmington, North Carolina. ”In addition,” she adds, “I think because people recognize psoriasis as mainly a non–life threatening condition affecting the skin, they have even less empathy.”
The best advice, whether interacting with someone with a chronic illness or, well, anyone: “Don’t make assumptions,” Talbert says. “I might look good on the outside, but that doesn’t mean I’m not suffering internally.”
2. ‘You’re Too Young to Have Arthritis’
When Talbert was just 25, she started having symptoms of psoriatic arthritis, but getting a diagnosis wasn’t easy.
“Since my symptoms started at such a young age, I couldn’t get anyone to believe me,” she says. “I went to several doctors who told me that what I was feeling was all in my head or to take an aspirin, lie down, and get some rest. I really wanted to scream.”
RELATED: When Psoriatic Arthritis Strikes at Young Age
3. ‘You Felt Fine Yesterday’
Symptoms of psoriatic arthritis can be unpredictable: One minute you might be feeling fine — the next minute, you might not have the energy to walk to the mailbox.
“Yesterday was yesterday,” says Talbert. “We all deal with pain differently, depending on the day.”
You shouldn’t have to explain that each day can be very different for someone with psoriatic arthritis. But people who don’t have PsA may not understand that flares — periods of increased disease activity where symptoms worsen — can come and go without warning.
RELATED: Your Head-to-Toe Guide to Easing Psoriatic Arthritis Symptoms
4. ‘At Least You Don’t Have Cancer’
Saying this to someone with psoriatic arthritis minimizes the severity of a person’s disease or symptoms.
And while PsA may not be life-threatening, the pain and fatigue can really limit what you can and can’t do each day, as well as take a toll on your mental health. It’s certainly not your responsibility to explain how your symptoms impact your life, but it may help someone understand and empathize — and rethink their dismissive comments.
RELATED: 8 Surprising Ways Psoriatic Arthritis Can Affect Your Health
5. ‘Is It Contagious?’
People may see the flaky, red skin symptoms of psoriasis and wonder if it’s a rash they could catch. The answer is no, but that’s beside the point. Because asking someone with psoriatic arthritis this question is bound to make them feel less-than.
“If people have skin disease and psoriatic arthritis, please don’t ask if it is contagious,” Dr. George says. “Patients already feel self-conscious enough as it is.” It’s a “very inappropriate question to ask” and it can ”have a devastating effect on those people who are suffering,” she adds.
6. ‘It’s All in Your Head’
This statement is untrue as well as hurtful, because it implies that the individual with psoriatic arthritis is exaggerating their symptoms.
And the condition — and symptoms — are all too real. Psoriatic arthritis is an autoimmune disease, which means your body’s immune system turns on itself, and, in the case of PsA, attacks joints and skin. That’s what triggers the most common psoriatic arthritis symptoms: pain, stiffness, and swelling. And if psoriatic arthritis is not treated early and effectively, inflammation can eventually lead to permanent joint and tissue damage.
7. ‘Are You Sure You’re Not Just Being Lazy?’
Widespread inflammation in the body, common in people with psoriatic arthritis, can cause serious fatigue that has no relation to laziness.
“Just making the effort to get up to go to the bathroom wears me out as much as if I’ve gone for a run,” says Talbert.
A good tip for dealing with anyone who implies that laziness is to blame? Let them know that you’d gladly trade your profound fatigue for the energy to have a busy, productive day.
8. ‘You Just Need to Try X’
Telling a person with psoriatic arthritis that they need to try a certain supplement, diet, or other strategy (“Eat healthier! Have you tried yoga? What about a colonic?”) might suggest that their lifestyle is the problem — and that a simple adjustment would make all the difference. “Asking if someone has tried to lose weight or exercise, for instance, is a particularly unhelpful thing to say to someone with psoriatic arthritis,” George emphasizes.
Unfortunately, people assume there’s an easy fix for psoriatic arthritis, George notes. But it’s a complex, systemic illness and psoriatic arthritis patients are more likely to have cardiovascular disease, metabolic conditions, and depression.
It’s possible someone sincerely believes they’ve heard about a new treatment or development and they’re trying to be helpful. But there are more sensitive ways to go about this. It can’t hurt to tell them that you and your healthcare team (which likely includes a rheumatologist and a dermatologist) have a treatment plan that’s right for you.
9. ‘I Know Exactly How You Feel’
Many well-intentioned people say this as an attempt to connect with someone who has psoriatic arthritis. But unless the person actually has the disease themselves, they can’t know what it feels like.
Incidentally, that’s the case even if the person commiserating has another type of arthritis, such as osteoarthritis, which causes different symptoms.
RELATED: What Psoriatic Arthritis Really Feels Like
What to Say to Someone With Psoriatic Arthritis, And What to Do
Let friends and loved ones know that there are ways to talk about PsA that can foster connection and comfort.
Acknowledge up front that the person is dealing with a difficult condition. “I would encourage people to affirm how tough psoriatic arthritis must be to cope with,” says George. But it’s also okay to be optimistic. George notes that “there are so many great treatment options that exist now.”
Listen to what the person with psoriatic arthritis is saying — and believe them. Feeling misunderstood and like you’re not being listened to can worsen anxiety and stress, which are already common in PsA. In fact, there’s likely a two-way relationship at work: Anxiety leads to PsA flares, and having a chronic condition like PsA increases anxiety. It’s important to take in what someone with PsA is telling you, rather than challenging them about their condition, or worse, dismissing it.
Before you barrage someone with questions, take a pause. “Ask permission before you plunge in,” suggests George. Make sure, too, that your questions aren’t judgmental or a form of advice giving. Stick with positive, open-hearted queries along the lines of:
- “How are you feeling today?”
- “Are you up to doing ____?”
- “I can see you’re struggling today. How can I help?”
Simple acts, such as accompanying someone on a doctor’s visit or offering to help with chores, are great ways to support someone with psoriatic arthritis.
And, finally, whatever the situation, you can never go wrong with a simple “I’m here for you if you need me.”
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