The notion of “in sickness and health” can take on a different meaning when that sickness is going to stick around for the long haul, as it does with inflammatory arthritis. Here, couples candidly share how a partner’s chronic illness has really affected their relationships and a psychologist whose clinical practice focused on chronic illness offers advice for coping with challenging situations.
Please note: Some peoples’ names have been changed for privacy reasons.
‘There Are Times When I Just Can’t Smile’
Jason was diagnosed with ankylosing spondylitis long before his marriage to Beth. They were an active couple for a quite a while but gradually Jason’s ability to be as physically and socially active came to a halt. Surprisingly, that hasn’t had much impact on their relationship, but his grumpiness has.
His ever-present pain is a mood killer for sure, he says. “There are times when I just can’t smile, and she thinks I’m mad at her. Even when I’m trying to be kind and supportive, it comes across as crabby and she calls me on it,” says Jason.
One thing he’s certain of is the love and support of his wife. “She is my advocate at doctor’s appointments and makes sure my nieces and nephews don’t jump all over me. When I’m stiff, she is the one who pushes me to take a hot bath or use a heating pad. She takes great care of me, and that’s why I want to be able to do more for her.”
‘I’ve Had Total Meltdowns When We Travel’
For Dibs Baer, who has rheumatoid arthritis, her biggest fights with her girlfriend Sam have occurred while they were traveling. Her girlfriend like to travel and sightsee, and that’s really hard for Dibs. “She like major tourist stuff; she wants to see everything like all day long. I physically cannot walk for more than an hour or two without being in excruciating pain. So there have been times when I’ve had total meltdowns in the middle of our outings because I just can’t go any farther. Then she cries,” says Dibs. “She is so loving and wonderful, but it just took us a few times to have these fights to figure out how to communicate about it and set limits before we head out for the day.”
On the other hand, Sam always gives the most amazing foot rubs without even being asked. But Dibs worries that her pain and fatigue symptoms hold them back as a couple, and she feels bad about it.
‘My Husband Didn’t Believe How Much Pain I Was In’
The most trying time for Crystal and Craig Gilroy was actually just before Crystal’s diagnosis. She was having constant pain and fatigue but says her husband didn’t think there was anything seriously wrong. Crystal felt like he interpreted her lack of effort and dwindling desire for sex to laziness. After no real answers, she found a doctor who conducted blood work and X-rays to finally diagnose rheumatoid arthritis (RA).
When they got the diagnosis, Craig was happy because there was a medical reason for her pain and fatigue. “My husband felt guilty for not believing me about the pain, but he now he had a label and could work on ‘fixing’ it,” Crystal says. However, their sex life isn’t quite the same. “He worries about hurting me, so we don’t do some of the positions we did before. It might not be the same, but we are closer and happier today than before the diagnosis.”
‘My Pain at Night Keeps Us Both Up’
Dorette Meiring was diagnosed with psoriatic arthritis after she and her husband were married. “My husband has always cared for me, but after my diagnosis, he cares more and more every day,” Dorette says. The pain has become relentless in the last two years, which makes it difficult for her to do household chores or go out for weekly dinners. But her husband encouraged them to hire a cleaning person to help around the house and he tries to make it as comfortable and enjoyable as he can when they do go out.
“He understands my pain and makes sure I am okay all the time,” she says. And that carries over into the night when her pain and itching often keep them both up. “He understands and never complains about my tossing and turning. He reminds me to relax and not to worry about him.”
‘My Special Diets Can Feel Like a Burden’
Lauren Webber and her husband were shocked when she was diagnosed with rheumatoid arthritis two years into their marriage. “He saw me at my absolute worst with paralyzing pain day after day. At times I felt like a burden on him and I didn’t fully understand what was happening in my body,” she says.
The burden she feels most strongly about, however, has less to do with her physical symptoms and more to do with a post-diagnosis lifestyle change. “For the past year, I’ve been on different diets, so it can make cooking meals very difficult. I have a strict list of foods I avoid, so a good majority of the time we eat separate dishes, or we will alter a dish to fit my dietary needs.”
The good news is that Lauren’s healthy lifestyle changes have made her husband pay closer attention to his health. For one thing, they’ve recently discovered juicing. They make juices at home with foods they both can eat and it’s a fun activity to do together.
‘I Need to Learn to ‘Get Into the Mud Puddle’ with Her’
“My rheumatoid arthritis has actually brought us together and made our marriage stronger,” says Renee Anderson, a mother of three who homeschools her children. “We’ve realized what it truly means to stay committed to one another in sickness and in health and loving one another unconditionally through hard times. He has spent countless nights holding me, counseling me, or rubbing my back when I am struggling emotionally with the realities of living with daily chronic pain.”
Her husband Josh says Renee’s illness has strengthened his faith in God and cemented his calling to help take care of her and his family’s needs, but he struggles with the desire to “fix” things. “Often times I just need to listen when she needs to tell me how she feels physically, or what she is feeling mentally. She calls it ‘getting into the mud puddle with her,’” Josh says. But that’s actually the hardest thing for him. “Rheumatoid arthritis leaves me feeling helpless to reduce her pain and inflammation.”
‘I Stopped Talking About My Illness Because I Didn’t Want to Sound Like I Was Whining’
Kelly Young, author of Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease, was married for 28 years. During the 20th year she was diagnosed with rheumatoid arthritis. “I believe that a major change like living with a serious illness can change relationship dynamics by bringing out whatever weaknesses are there already. For example, sometimes my husband wanted to me to go do things that I wasn’t able to do on that day,” Kelly says of her now ex-husband. She found it difficult to talk to him about her symptoms because she didn’t want to sound like she was whining. “He never became educated about the disease or wanted to talk about what I was going through,” she recalls. “So even though we were in the same house, I was going through all of it alone, which created a wall between us.”
‘I Can’t Be the Kind of Wife and Mother I Want to Be’
New mom Abby’s rheumatoid arthritis has been significantly worse since Abby had her baby. So her husband does most of the household chores, meal prep, shopping, bathing the baby — and also works full time. “All I do is mostly nurse, feed, and sleep with the baby. It’s been awful,” Abby says. She is disheartened because she feels she can’t be the kind of wife and mother she had intended to be. “I never take care of my husband. To be perfectly honest, the impact this disease has on my marriage is almost all negative. He tells me he’s happy to take care of us, but during fights, he displays a lot of resentment in his words.”
But Abby sees one silver lining. “It forced my husband to contribute way more to our family than I think he intended,” she says. “It’s given him perspective and he appreciates his well-being and health more.”
A Psychologist’s Tips for Helping Couples Cope
Some of the advice on how to help your relationship adjust to the strains of chronic illness also applies to couples coping with any major life stress: Communication about both of your needs is key. The timing of a partner’s diagnosis may also be a factor to pay attention to. “How couples navigate these problems can depend on whether arthritis entered your partnership after you had to settle yourselves into roles and expectations, or whether arthritis was part of your partnership from the beginning,” says Kim M. Dell’Angela, PhD, associate professor of clinical psychology at the Chicago School of Professional Psychology. Here are some of her tips to handle the most common roadblocks couples face.
1. Have a candid sit-down with your partner about what aspects of reliance create the most difficulties for you. Talk about how you will convey your need for help and how you hope that your partner will respond.
2. Check for any signs of resentment from your partner. Encourage them to honestly share their struggles with helping, watching you suffer, or their worries about the future. Then focus on coming up with solutions together, such as getting others to help or enlisting the help of a therapist to talk things out.
3. If sex is an issue, don’t ignore it. Be honest about physical issues like pain or the concerns about hurting your partner. Consider asking for a referral for physical therapy to discuss sexual positions and activities that are less strain on your body. One option: schedule sex for times when you are most likely to feel physically comfortable.
4. Cultivate friendships outside of your relationship. While that may seem like a disconnection, it’s actually a healthy way to navigate everyday struggles. In fact, a study at the University of Texas at Austin showed that people who have friendships outside of marriage experienced lower levels of stress when conflicts arose. Friends can be a great buffer provide an additional layer of support so you don’t have to feel like you’re relying fully on your partner. They’re also a good outlet to vent to when issues in your relationship arise.