“We’ll wake up on a Saturday morning with all these grand plans, then we have to adjust or cancel them depending on what my psoriatic arthritis symptoms are that day,” says Paige Meleney, 29, a veterinarian in Cleveland who chronicles what it’s like to live with psoriatic arthritis on Instagram. That’s the reality of psoriatic arthritis. Like any illness, it can get in the way of what you want to do, which can put stress on relationships. “There are periods when you may feel great and have few or no symptoms, and then a psoriatic arthritis flare comes on unexpectedly,” says Ellen Amanda Snyder, MD, assistant professor of medicine in the division of rheumatology, allergy, and immunology at the University of North Carolina School of Medicine in Chapel Hill. “You have to remind yourself that it’s nobody’s fault,” she emphasizes. Which doesn’t mean it’s easy for either you or your partner to cope with any ensuing disappointment, or that resentments — on both sides — won’t ever simmer. Meleney and her husband, Eric, work hard to keep their lines of communication open to defuse any tensions that may develop when her PsA acts up. Try the expert tips below to keep your bond strong, whatever the day brings. “If you can accept the unpredictability, that helps reduce any resentment the healthier partner may feel and ease the guilt the person with psoriatic arthritis may experience,” says Eleanor Ainslie Anderson, MD, assistant professor of clinical psychiatry at the Perelman School of Medicine at the University of Pennsylvania in Philadelphia. With that acceptance comes a greater willingness to be flexible. “Being able to roll with unexpected changes can reduce conflict,” says Dr. Anderson. Meleney recalls a recent outing that required a quick rethink when things didn’t quite go as planned. “We were shopping in Ikea, and I was doing okay, then suddenly I wasn’t,” she recalls. “Eric had to run back to the entrance and get me a wheelchair.” They continued shopping, with her husband pushing the cart and Meleney zigzagging through the aisles, despite the looks she got from some shoppers. “I know it’s not normal for a woman in her twenties to need a wheelchair to shop,” she says. Yet tough as coping with other people’s perceptions might be, she tries to stay sanguine. “There are times when I think I’ll be able to manage, and then that changes,” she says. “Sometimes we’ve had to leave concerts in the middle or get-togethers with friends because I wasn’t feeling well. It’s just part of life with psoriatic arthritis.” RELATED: What Psoriatic Arthritis Really Feels Like
2. Talk to Each Other
For Meleney, who was diagnosed with PsA at age 11, the other key to marital harmony is constant communication. The couple has gotten it down. “My husband checks in with me pretty much every morning,” says Meleney. “He’ll ask, ‘Okay, can we actually do everything we wanted to do?’” Experts affirm that open communication is the bedrock of any good relationship, even more so when one partner is coping with a chronic illness that can repeatedly derail the best laid plans. That includes talking to your partner about the nuts and bolts of your psoriatic arthritis treatment. “Any time I switch a medication, I discuss it with Eric,” says Meleney. “He is aware of the risks and potential side effects of everything I’m taking.” Knowledge is power, and it’s better to share that power with your significant other. The more a partner knows what is happening, the better they’ll understand how the person with PsA is doing, how that might affect their daily life, and in turn, how their life as a couple is affected. “When you hide what’s going on with your health, you’re discounting your mate’s ability to rise to the occasion and be there for you,” says Meleney.
3. Decide What Can Wait
For any household to run smoothly, each person has to take on different domestic responsibilities. But, Anderson says, “If you’re in bed and all your joints are very painful, or if you’re feeling tired, it can be hard to do your part.” It makes sense to have a conversation with your partner about what things can be put off when your psoriatic arthritis symptoms flare (i.e., the laundry) and what can’t (walking the dog). Know that you’ll have to switch off roles sometimes, someone will have to do double duty, or something will have to wait to get done.
4. Find Activities You Can Share
Whether you and your partner plan regular walks or online workouts, having a routine together can make you feel closer — and can also give your loved one insight into how you’re doing physically. “The two of us do yoga in the morning at home,” says Meleney. “Sometimes he’ll pick up on things I’m not aware of, like whether I’m experiencing more stiffness than usual.” Other times, it just feels good to share the little victories. “Sometimes, I’ll just be so happy to say, ‘I was actually able to do this today!’ which lets him know when I’m feeling good,” she says. RELATED: 7 Workouts to Try if You Have Psoriatic Arthritis
5. Know the Difference Between Concern and Control
“Couples need to come to an agreement where each person feels they have autonomy over their own choices,” says Anderson. That also applies to health decisions, she says, even if one person is worried that the other is pushing things too far. After a week of not feeling well, for instance, Meleney woke up one morning energized, so she suggested that they spend the day on the ski slopes. Her husband, understandably, wondered if that was the best choice given her symptoms in the preceding days. Of course, it’s easy to feel defensive when you believe someone is second-guessing your decisions. Anderson suggests saying something like: “When you second-guess that choice I made, it makes me feel as if you’re trying to parent me, and I don’t like that.” The important thing is finding a balance that allows for autonomy but also leaves room for care and support. “All of us, whether we are living with a chronic illness or not, are allowed to make bad choices,” says Anderson. As for Meleney, she says she doesn’t mind when Eric checks in, because he tends to phrase his concern with compassion. “It’s never a ‘Hey, you can’t do that!’” Meleney says. “It’s more like, ‘Let’s talk about this situation together and decide if it’s right.’” RELATED: 6 Psoriatic Arthritis Symptoms You Shouldn’t Ignore
6. Focus on What You Can Do, Not What You Can’t
It’s tempting to want to get through everything on that to-do list. But slowing down and taking life one step at a time will not only make things easier for someone with a chronic illness, it’s likely to make you feel happier as a couple, too. “Recently, we were at a garden center, and Eric was looking at everything and taking his time,” says Meleney. She, on the other hand, was trying to prod him along, silently wondering how long she could keep up her strength and whether she’d have enough juice for all the other errands in their day. “Finally, Eric asked me to stop rushing him — he told me that he was enjoying looking at all the plants on display,” Meleney says. Once she explained her worries, they hatched a new plan to make the garden center the focus of their day. “We pretended that the store was really an exotic botanical garden, rather than a garden center in Cleveland, and enjoyed the moment,” she says with a laugh. As for those other errands: “We decided that if we did want to do anything else, I could either stay in the car while Eric ran in or we’d leave them for another day,” she says.
