When you’re living with rheumatoid arthritis, your husband is too. The disease’s pain and fatigue can strain even healthy relationships. But RA isn’t going away, so what can you do? Here’s how to manage your condition and your marriage. Plus, what’s your inflammation IQ? Take our quiz to find out...
If you’re one of the 1.3 million Americans with rheumatoid arthritis, you know it’s hard enough to take care of yourself, let alone your spouse.
But when it comes to marriage, a little loving care can yield big results. Adults with rheumatoid arthritis in happy marriages had less pain and physical and psychological disabilities than those whose relationships were strained, according to a 2010 combined study by Johns Hopkins School of Medicine, Duke University Medical Center and Wayne State University.
That’s because a strong relationship helps reduce the stress and depression that accompany RA, says Sharon Kolasinski, M.D., interim director of the division of rheumatology at the Hospital of the University of Pennsylvania in Philadelphia.
“Rheumatoid arthritis is a complex disease affecting all areas of your daily life,” she says. “It’s key to have someone who can help you with physical tasks at home and drive you to the doctor. And, because the disease is so frustrating, it’s important to have someone you can vent to.”
Just remember, he’s facing challenges too. A healthy marriage takes effort from both sides. Here are practical steps to keep your relationship thriving – even when you're feeling your worst.
1. Keep talking
No matter how bad you feel when living with rheumatoid arthritis, don’t shut your husband out. Keep communicating, says Adena Batterman, LCSW, manager of rheumatoid arthritis support and education programs at the Hospital for Special Surgery in New York City.
“You may be able to perform tasks one day, but not the next,” she says. “There needs to be an almost daily renegotiation of how you and your spouse will handle these chores.”
2. Express yourself
Tell your partner your thoughts and feelings, Batterman advises.
“The experience of being heard and empathized with promotes intimacy,” she says. “It can bring you closer and strengthen bonds.”
3. Don’t take frustrations out on your spouse
When expressing feelings about living with rheumatoid arthritis, watch your phrasing. Make it clear you’re unhappy with the situation, not your husband.
“Use phrases that start with ‘I’,” suggests Batterman. “Say, ‘I feel’ or ‘I wish,’ not ‘You didn’t’ or ‘Can’t you just…?’”
Living with rheumatoid arthritis is tough, but try not to think of your relationship as a marriage between a sick person and a healthy one, says David B. Seaburn, Ph.D., LMFT, a family therapist who specializes in working with people with chronic illnesses.
Instead, consider yourselves a team working together to solve problems caused by the illness, he advises.
4. Ask for help
With rheumatoid arthritis, pain and fatigue can make simple tasks - like bathing children, walking the dog and cooking dinner - too tough to handle.
And it’s natural to be reluctant to ask for help with routine tasks, says Kolasinski.
“We don’t want to burden our loved ones,” she says. “We act like everything is fine.”
But it’s best to be honest. “When you’re in pain and fatigued, let your family know,” she says.
Asking family members for help can make them feel less helpless as you cope with your disease, Batterman says. Your husband, children and other relatives may feel frustrated watching you suffer.
But, again, phrasing is key, so you don’t offend with your demands. Before asking for help, think about exactly what you need, Batterman says.
“Be specific about the task, day and time,” she says. “Be assertive and clear, but not aggressive.”
Start by saying, “I really need help,” she suggests – phrasing it as a request rather than a demand.
And don’t be afraid to show your children that you can’t do everything, advises Kolasinski.
“Most people with RA are very capable of taking care of their children,” she says. “But when you have limitations, it’s OK for kids to see that and learn that everyone has them.”
5. Don’t avoid sex
Physical intimacy is an important part of any relationship – but the pain and fatigue can sometimes make it the last thing you want. And that’s a topic some people aren’t comfortable talking about.
“Doctors tend not to bring it up and patients don’t ask,” says Victoria Ruffing, R.N., nurse manager at the Johns Hopkins Arthritis Center, who has written about intimacy issues for people with RA in the reference book Clinical Care in the Rheumatic Diseases (American College of Rheumatology).
But facing intimacy problems is key to making your marriage work.
“Say something to a nurse or physician,” Ruffing advises. “Choose someone you feel comfortable talking to.”
Open the conversation with a simple statement, such as, “RA is really putting a strain on my relationship,” she says.
Then, armed with your doctor’s advice, tackle the issue with your spouse. Ruffing offers these tips:
Talk it over. Set a time for discussion. Be open about your feelings and the physical limitations of living with rheumatoid arthritis, such as pain, fatigue, decreased desire and a changing body image. Also address issues that affect your husband – for example, his possible fear of hurting you. If such conversations are difficult for you, consider writing your feelings down, she says. “There’s nothing wrong with writing a letter if it gets the job done.”
Schedule sex. Plan for time alone with your husband. On date day, take an afternoon nap so you won’t be so tired. “And take pain medication an hour before your date, so it’s working at its peak” when you’re with your husband, suggests Ruffing.
Warm up before sex. Take a warm bath beforehand to minimize pain and stiffness. Make the bed toasty with a heating pad, flannel sheets or an electric blanket.
Be prepared. Have some rolled-up towels or pillows nearby for support. Also stash a water-based lubricant within reach, because many women living with rheumatoid arthritis suffer from vaginal dryness.
Be flexible. When you’re too tired or your pain is too overwhelming for sex, try other ways to be intimate. “Spend time with massage or just hugging and cuddling,” Ruffing advises.
Address your partner’s fears. Be honest and gently tell your husband when he’s hurting you. But make sure he knows that he won’t make your arthritis worse, she says.
6. Take care of your husband too
Just as your husband takes good care of you, nurture him when you can. You may not be able to help with physical tasks, but you can offer plenty of emotional support. It may be as simple as listening to his worries about living with rheumatoid arthritis.
“It may be very difficult for him to see you in pain,” Batterman says. “He may feel he has little or no control of the situation. He’s dealing with the unpredictability of your illness too.”
You can help your spouse cope with your illness by finding a rheumatoid arthritis support group for him. Or introduce him to spouses of acquaintances with RA.
“It can help them to know another person who understands what it’s like to be living with rheumatoid arthritis,” Batterman says.
7. Address stress
The more you can limit stress, the better you’ll feel, so you can be an equal partner in your marriage, says Seaburn.
Here are Kolasinski’s stress-reduction tips:
Exercise. “It’s the best form of stress release, and even people with joint deformities can do some exercise,” Kolasinski says.
But avoid high-impact exercise, such as running or playing tennis, she says. There are plenty of other options. Aquatic workout programs are ideal, because water offers resistance to build muscle without straining joints. The Arthritis Foundation offers programs in many areas. Or try yoga, Pilates or just walking around the block.
Meditate. Call your local hospital and ask if they offer mindfulness meditation classes or other stress-management programs.
“Meditation reduces your heart and respiratory rates, and stress hormones,” Kolasinski says. “It helps you cope better with emotionally charged issues – like the anxiety and fears of dealing with your disease.”
If meditation isn’t your thing, look into other stress-management programs, she says. You can find some self-help programs through the Arthritis Foundation.
8. Don’t let RA control you
People with rheumatoid arthritis suffer less stress and depression when they feel some control over their disease, says Seaburn. If you’re newly diagnosed, learn as much as you can about your illness and medications.
“Knowledge is powerful,” Kolasinski says. For example, “it can help to understand that with new medications you don’t have to be disabled.”
For more information, visit our Rheumatoid Arthritis Health Center.
What’s Your Inflammation IQ?
The latest scientific research indicates that inflammation is behind more than 80% of the conditions we suffer from – everything from arthritis to heart disease. Dr. Mark Hyman, author of The UltraSimple Diet, agrees that inflammation leads to a host of health problems. Fighting it can get you on track to a healthier, happier life.
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