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, 63, a patient advocate who has had psoriatic arthritis for four 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 “When there are no visible signs of a disease, it can be tough for people to understand the serious toll PsA can take on someone’s daily life,” says Rosalyn George, MD, a dermatologist in private practice in Wilmington, Delaware. After all, others 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. “I might look good on the outside, but that doesn’t mean I’m not suffering internally,” Talbert says. The best advice, whether interacting with someone with a chronic illness or, well, anyone: “Don’t make assumptions,” Talbert says.
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.” Psoriatic arthritis is a complex disease, and though it most commonly develops in people between ages 30 and 40, according to John Hopkins Arthritis Center, those of any age can develop this type of arthritis.
3. ‘You Felt Fine Yesterday’
Symptoms of psoriatic arthritis can be unpredictable — one minute you might be feeling fine; the next, 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 might want to explain that each day can be very different for someone with psoriatic arthritis. Additionally, patients may experience flares, periods of increased disease activity where symptoms worsen; these episodes 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. “I want people to acknowledge that psoriatic arthritis is a serious chronic illness,” Talbert says. “We are in pain every day, so much so that most of us have to work from home.” Indeed, in one survey of 203 people living with psoriatic arthritis, 44 percent said they have trouble performing physical tasks, 36 percent said they miss work, and 32 percent reported a loss in productivity, according to CreakyJoints. And while PsA it may not be life-threatening, you might want to point out that psoriatic arthritis can raise a person’s risk of developing other serious health conditions, such as heart disease, depression, and diabetes. RELATED: 8 Surprising Ways Psoriatic Arthritis Can Affect Your Health
5. ‘Is It Contagious?’
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.”
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?”) implies that they could cure their symptoms if they wanted to — and that their lifestyle is the problem. “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. A good thing to keep in mind: Typically, whatever the situation, it’s better to be a good listener, without casting judgment, than to give out free medical advice.
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 You Should Say to Someone With Psoriatic Arthritis
Let friends and loved ones know that there are ways to talk about PsA that can foster connection and comfort. Note: These guidelines may also apply when broaching any challenging topic, whether an illness or the death of a loved one.
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, while offering them hope that they will find the right physicians and treatments to manage it effectively,” says George.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?”
Of course, actions speak louder than words. 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.”
