Preserving Healthy Relationships

By Mary Anne Dunkin

When Wendy Santos married her husband, Vince, in 2001, she couldn’t have predicted that within a few years she would need to become “a specialist in respiratory care” through a trio of surgeries to enlarge Vince’s airways, which had been damaged over a lifetime with juvenile arthritis. She didn’t anticipate the challenges and missed days of work that would come with his eight additional surgeries, or how arthritis would affect their lives even on good days.

“I didn’t know enough to know what I was getting myself into,” says Wendy. “But I felt like he really loved me, and I really loved him, so we’ll figure it out. Once I agreed [to marry him], I just never looked back.”

Vince himself didn’t know what to expect from the disease he had battled since he was 2 years old. One of his greatest concerns became how it would affect Wendy.

Eighteen years of marriage and two daughters later, the Houston couple’s life together has been a lesson in the trials arthritis can bring to a relationship, the determination, compassion and love it takes to deal with them, and the rewards of a strong and loving partnership.

“We have gone through so much together,” says Wendy, but it has brought blessings, too. “I would do it all over again, because what we have is really special,” she says. “As a result [of Vince’s arthritis], our kids are very sensitive to elderly and other people with disabilities, and they are kind.”

Arthritis and its impacts may be hardest on your closest ties, but it also can test relationships with other family members, friends and coworkers – connections that are important for both mental and physical well-being. In fact, research has shown that strong relations and social support can help people maintain a healthy body mass index, control blood sugar, improve cancer survival, reduce risk of death from cardiovascular disease, ease depression and improve overall mental health.

With communication and creativity, your relationships can survive and even thrive despite your arthritis, says Katie Willard Virant, a St. Louis psychotherapist who works with people with chronic diseases. (Hear Virant discuss relationships and arthritis in a Live Yes! With Arthritis Podcast.)

The loss of your (or your spouse’s) health and your changing role in the relationship – from breadwinner or to caregiver, for example – should be acknowledged, felt and shared, and you should allow yourself time and space to grieve, says Virant. When couples feel free to communicate their disappointments and frustrations, they open avenues to strengthening the relationship and sharing responsibilities, like household tasks.

Depending on how arthritis affects you, sexual intimacy may be painfully difficult, too. And fatigue or medications can leave you with little desire and your partner feeling unattractive or unloved. Working with your doctor and occupational and physical therapists can help with some of the physical challenges, and a psychotherapist can help navigate the mental and emotional challenges.

New approaches may include timing medications so you feel better and less fatigued, taking a warm bath (perhaps with your partner) to ease stiffness, experimenting with positions that are less painful or more pleasurable, or even rethinking what intimacy means for each of you.

Couples who work through their relationship challenges may benefit even in unexpected ways. One Swedish study showed that among married people with rheumatoid arthritis (RA), those whose marriages provided “daily emotional support” experienced less pain.

For 15 years after a diagnosis of osteoarthritis that affected his knees, hands, back and ankles, Al Huber, 62, continued working as a plumber, a job that stressed almost every joint in his body. When he retired, he found himself in another tough role – helping his wife care for four of his eight grandchildren – some almost daily.

Although arthritis makes it impossible for the Pittsburg grandfather to run or wrestle with the kids – ages 2 to 10 – he has found other ways to have fun with them, like playing toss while he sits, or doing crafts together.

Explaining your illness in a way your children or grandchildren can understand and finding ways to play with them are essential. “It’s always good from the get-go for parents to communicate matter-of-factly and calmly,” says Virant, “and to be real: ‘There are some times I am real tired. I wish I weren’t. I wish I could play in the way that you like to play.’”

You can go to the park or read a book together. Or you can be an active spectator, such as timing them when they run or measuring how far they can jump. “There is a way to be engaged with children, working creatively, without having to push yourself and expend energy you don’t have,” she says.

Adult children and other family may be less accepting than young ones. When Robin Dorko, 67, of Greensboro, North Carolina, can’t make or keep plans with her two grown daughters and three grandchildren due to her RA, she senses their concern. “When I tell them I can’t do something, I think they worry about me,” she says. She has learned to offer a vague explanation, like “my arthritis is acting up today,” rather than giving specific symptoms or dwelling on pain.

If your family members worry excessively – or wonder why you have to cancel commitments, because you don’t look sick – educating them is key, says Andrea Risi, a Denver psychotherapist. Share printed information with them, she says, and “invite your family members to doctors’ appointments with you, so they kind of see the things you are going through and the questions that come up in those kinds of settings.”

Arthritis can especially challenge friendships that were built on a shared interest in activities you are no longer able to do – for example, your tennis partner, the friend with whom you would shop till you dropped, or the guys you like to shoot hoops with.

“Most of the time, me and my friends want to play basketball, soccer, football, hike, jog or [go] camping,” says Jacob Phillips, a high school student in Twin Falls, Idaho. Since his 2017 diagnosis of polyarticular juvenile arthritis, he says, “That is harder to do now. And it is what most guys do, which makes it kind of awkward when you have physical weaknesses in those areas.”

Jacob engages in activities he can do, such as swimming or hiking, and he invites friends to watch sports on TV. He also plays online video games with them and talks to friends on the Utah/Idaho JA Families Facebook page. “It has helped me by letting me know there are other kids like me,” he says.

Virant recommends being up-front about your arthritis challenges and meeting friends halfway. Instead of running together, for example, “you might say, ‘I’m really slow these days. Can we walk a little bit and then sit and chat a little bit?’ Good friends will stick by you and be understanding. Those are the kind of people you want in your life.”

You may find that some friends are in the same boat – or someday might be. When Dorko was diagnosed with RA at age 36, she felt alone. Thirty-one years later, she’s in good company. “I go out to lunch with friends and after an hour, we all kind of creak and groan getting up.”

If frequent medical appointments cause you to run late or leave early, or if pain and fatigue make you unable to do certain aspects of your job, your supervisors may raise concerns or your coworkers may become resentful.

Your first decision is whether to reveal your arthritis at work, says Risi, who counsels people on whether and how to disclose an illness. Although you may fear being seen as weak or less capable, the risk of disclosure might be worth the protection it offers through the Americans with Disabilities Act. Revealing your disease opens opportunities for educating supervisors and coworkers about your disease, Risi says. It also allows you to show that you’re motivated to work and to find solutions – for example, working from home on days when pain flares, switching shifts with coworkers, or just switching up certain tasks.

Risi recommends getting your supervisor or the human resources department involved only if you are unable to work directly with your coworkers to find solutions.

Living with a chronic illness – either yours or a loved one’s – can lead to personal growth and other benefits, says Virant. “There’s no doubt that chronic illness affects relationships, and it can challenge relationships, but meeting those challenges and receiving that social support is vital in feeling good about yourself.”