If you have rheumatoid arthritis, osteoarthritis, or ankylosing spondylitis, your pain and stress can be off the charts. Truth time: You’re not the only one hurting. Another negative side effects of being diagnosed with a chronic illness is the strain it can put on our partners. Our diseases can wreak havoc on romance; if you’re married, having chronic pain really puts the vow of “in sickness and health” to the ultimate test.
Partners and spouses of people with arthritis have to put up with and deal with so much, but they often suffer silently so they don’t hurt our feelings.
“It can feel pretty lonely sometimes,” says Anthony Marcum, whose wife of two years, Katheryn, 28, has had RA since she was 16.
Any shrink with a shingle would say communication is key in a relationship. We need to talk about our partners’ struggles, too. They do so much for us, so it’s important to acknowledge and validate their feelings, even if it stings (but it won’t sting worse than an IV in your hand!).
We talked with many different couples to determine this list of 10 things your partner is probably thinking but may be scared to say to your face.
1. “I always have to do everything around here”
During an arthritis flare, even the most ordinary or mundane tasks — laundry, cooking, cleaning, playing with and driving the kids, grocery shopping — can be excruciating and/or darn near impossible. So the brunt of daily chores falls on our partners.
When Stephanie Schaefer, 34, first started having symptoms last year, “there were weeks that I couldn’t sit up on my own.” Her husband Casey had to take on much more (they have four children) but didn’t complain once. “He has been my rock and surprises me daily with his support. I couldn’t imagine this journey without him.”
Anthony works every day so that he and Katheryn are able to afford to live and have health insurance because she’s unable to work. Even so, when he comes home he prepares dinner and cleans. “Even simple things like getting me a glass of water or hot tea is extremely helpful,” she says. “He opens things, as I often can not open them myself, like bottles of water.”
Some partners can handle the burden; some may eventually get resentful and that’s normal. A Harvard Business School study found that 25 percent of recently divorced couples blamed disagreements about housework as their number-one reason for the split. The same study suggests outsourcing the chores if you can afford it.
If you can’t, new research from the University of Utah claims that chores don’t necessarily have to be distributed evenly in a marriage, but it helps if you share certain tasks. For example, maybe you can’t stand and wash dishes, but you might be able to sit nearby and dry them.
2. “I wish we had more sex”
It’s a myth that the chronically ill don’t have a desire to get down and drrrrrty. Read any message board on Facebook related to chronic illness and the sex issue pops up a lot. Couple of problems, though: Some meds lower libido, and even if you wanted to have sex, how is it even possible when your body feels like it just got run over by a truck? The only throbbing going on is in your hands, feet, shoulders, or knees. Too much? Sorry, it’s true.
“It’s hard to be intimate at times,” says Katheryn. “I get frustrated with my body and take it out on my husband. RA definitely puts a strain on our relationship.”
A lack of sex or intimacy can destroy a relationship. For one, if your partner’s role has become more caregiver than lover, that’s not exactly hot. More important, according to a Georgia State University study, people in sexless marriages are more likely to consider divorce.
To avoid this fate, there are some things you can try, such as experimenting with different sexual positions that don’t hurt as much, say, or taking a bath beforehand to relieve joint pain. But if you just can’t have sex — or you just don’t want to — and it’s driving a serious wedge between you and your partner, counseling may be your best bet.
For support, check out chronicbabe.com or #chronicsex, a Twitter hashtag that offers resources for women with chronic illnesses who want to remain sexually active.
3. “Can’t you just try?”
A few weeks ago, Anthony and Katheryn were supposed to take his dad out for celebratory dinner after he recovered from a stroke. Before Anthony left work, Kathryn texted that she was in terrible pain and wouldn’t make it. “I was furious the whole drive home,” Anthony admits. “I felt like taking care of my wife was disrupting my relationship with my dad.”
When Anthony walked in the door, he found Katherine crying. She had tried to take a shower and get dressed but nearly fell in the tub. “She was hurt and stressed and overwhelmed,” he recalls. “I wasn’t angry anymore. Nobody would ask for this. It wasn’t her fault and it’s not her choice to suffer. Sometimes she just can’t do the things she wants to do.”
RA, OA, AS, and other forms of arthritis can rob couples of some of their favorite activities, from simple neighborhood strolls to active vacations with biking, hiking, or white water rafting. Lisa Root, 47, and her husband Justin have been married for 10 years and they used be constantly on the go with their young children.
“I had energy, I had joy, then wham!” Two years ago, an arthritis diagnosis changed everything. Now, “if he suggests playgrounds or amusement parks I cringe! I couldn’t wait until our vacation was over this year.” Lisa wants to use a walker but Justin has talked her out of it. “He tells me once I go to that level I might as well say I’m finished.” So she pushes herself for the sake of their relationship and their children. “I would rot without them,” she says.
Lisa’s husband is eight years younger than her and she fears “he’ll ignore his vows if I don’t fight my body to keep moving.” But all signs point to his unwavering support and commitment. Lisa’s hands are so swollen, her wedding ring was getting too scary to wear. So last Valentine’s Day, Justin bought her a pink, engraved rubber band that says, “I love you.”
4. “The bills are stressing me out”
A new Cornell study about money and marriage found that finances are a big factor in deciding whether couples split or stay together. And that equality in economic contribution holds couples together. So when medical bills start stacking up, and you can’t work because of your disability, it’s important to talk about it and get the angst out in the open.
Lisa believes the financial drain of having a chronic illness may have been the biggest hit on her marriage. She was planning on going back to work after their children were born but just couldn’t after her diagnosis. She doesn’t qualify for supplemental security income (SSI) or social security disability insurance (SSDI) so Justin “works four jobs to make up for it,” she explains. “I get the reminder often.” At the same time, he’s so supportive and his efforts mean lifesaving medical care. “He supplies the highest rate of insurance for me.”
Laurie Buonopane’s husband also has to work multiple jobs to compensate for her not being able to work, but “he forced me to quit my job and take better care of myself,” says Laurie, who receives SSDI. “He makes sure I never worry about how much my medical care costs. He tells me to hire a house cleaner as soon as I feel it’s too much for me to do it. He’s an amazing man.”
5. “I feel so helpless”
Some heroes don’t wear capes. When it comes to caregiving, our partners can be as superhuman as Superman (or Wonder Woman) but their kryptonite is feeling powerless. Casey Schaefer can’t stand seeing Stephanie in pain, sobbing, and “not being able to fix it.”
Anthony says he feels “lucky” to be able to shoulder a large burden of household and financial responsibilities, but admits, “despite all of the work I do to help, it doesn’t seem to make a difference. Whether or not the dishes are clean, the trash is taken out, dinner is on the table, or the bills are paid, Katheryn’s still in pain and needs more help. It can be hell watching the pain she goes through and frustrating that I can’t help her.”
No matter how impotent your partner feels, it’s important to remind them how much you appreciate them and that their hard work is not in vain. You can do this in a way that doesn’t require money or mobility — just write them a thank-you letter. New research published in Psychological Science found that short notes of gratitude gave recipients immense joy, much more than previous believed. (Yes, that’s actually a real study.)
6. “I don’t want to spend my free time in doctor’s offices!”
A 2015 study titled “Why Do People Avoid Medical Care” cited one unscientific-sounding reason: “I just don’t like doctors!” From wait times to weird smells, hanging out in hospitals or doctor offices is the opposite of a good time. But when you have a chronic illness, and you spend hours there getting infusions and injections and checkups, your doctors’ offices become like a second home. This can be depressing and annoying for your able-bodied partner, if they feel pressured to accompany you to every appointment.
Or you can think of it as a time to be there for each other and bond. “My wife goes to every blood test, every CAT scan, every X-ray,” says Jim Robb, who has been married 38 years. “She is my life.”
7. “I’m physically and emotionally exhausted, too”
There are limits to how much pressure a partner can handle when helping take care of someone with arthritis 24/7. In fact, caregiver burnout and compassion fatigue, which The American Institute of Stress calls “vicarious traumatization,” are real conditions that can take a serious toll on your loved one’s health. If a partner is caring for you 24/7, they may neglect their own well-being. “Anthony puts his needs aside often to tend to mine,” Katheryn admits.
That can eventually result in anxiety and exhaustion, among other problems. The Family Caregiver Alliance found that 60 percent of caregivers show signs of depression. Encourage your partner to seek out caregiver support groups and take time out for themselves, even for just a few minutes per day.
8. “In a million years, I never thought I’d have to _____”
Fill in the blank: Give you shots, dress you, feed you, administer pills, bathe you, carry you, brush your hair, rub your feet, and yes, even wipe your butt. If you’re lucky, you’re with someone who rises to the occasion instead of runs for the hills. Last Christmas, Jim Robb was in so much pain, he couldn’t lift his arms above his waist or hold a fork, so his wife fed him.
Susan Rundell, 42, has had RA and severe back pain for 20 years so her husband knew about her illness when they met on a dating site. “I was completely honest from the start and lucky for me he didn’t run when he had the chance!” she jokes. Today, he has no problem shaving Susan’s legs or painting her toenails when she can’t bend over to do it herself. “We have our good and bad days like most couples, but we get through it,” she adds.
9. “I’m not happy”
There are a bunch of studies that claim the power of positive thinking can help people cope with chronic illnesses. There’s no scientific proof that your mindset can cure your disease, but your partner still may feel immense pressure to keep up a façade of happiness to help you. Even if it’s not their true feelings. Then when they can’t hold it in anymore, they freak out, which can cause relationship strife and even breakups and divorce. That’s why it’s important to check in with your partner and have honest conversations about how they’re doing, too.
10. “I miss our old life”
It takes a person of amazing character to stick with someone who has a chronic illness, especially when it may feel like they’re missing out on your formerly illness-free life.
Ted Bonar and his wife Lea used to have a standing Friday night date — they would hop on their motorcycles to get frozen yogurt. “We had so much fun and it was important to us,” he says. But Lea had to sell her Shadow 750 after her arthritis diagnosis left her debilitated. “It was too much weight for her to handle,” Ted says. “Her neck hurts when she wears a helmet. Her hands froze and her hips got effed up, too.”
Ted mourns those days but has learned to move on and accept a new reality. “That’s not our life anymore. That’s okay but it was definitely an adjustment.” He admits that he “made all the mistakes” after her diagnosis because he didn’t understand her pain and fatigue. “I didn’t get it at all and I hurt her. I got frustrated with having to go home or not go out. I reacted like she was just tired. I talked about exercise and was frustrated with her naps.”
Ted and Lea have worked through it together as a couple and have found a good middle ground. “I really try to follow her lead,” he says, “I’ve learned to let her have good days and bad days. That wasn’t easy. Sometimes she will push it, even if she will have a rough day the next day. She feels bad, she will say, ‘I’m sorry,’” Ted adds, “but she has nothing to apologize for.”
Lea still has a scooter and they aren’t selling it just yet. “She’s hoping she can find a year where she can ride again. We still have hope.”
