Relationships & Arthritis
Arthritis can affect your relationships in many ways. From having to cancel plans with a loved on, to not feeling romantic because of your pain, there are ways you can cope with the impact arthritis may have on your relationships.
To Tell or Not to Tell You Have Arthritis
Keeping your arthritis a secret? How to know who to tell.
By Heather Johnson Durocher
Maybe you want to tell. Riding the emotional ups and downs of arthritis can be easier when you talk about it with family, friends, and even co-workers; some may be able to offer arthritis help and advice. Maybe you don’t want to tell. You may fear you’ll be treated differently once people know you have it, or you may simply dread the question, “What is arthritis?”
Alex Shikhman, MD, a San Diego rheumatologist, says the majority of his patients opt to stay quiet about their arthritis in the workplace for fear of it adversely affecting their job status. “They worry that they will get discriminated against at work and that it will affect their health insurance premiums,” says Dr. Shikhman.
Several factors can influence people’s openness, including what type of arthritis they have, how severe it is, and what their social environments are like, says Mark Lumley, PhD, a Detroit psychologist whose research
has explored disclosure of secrets and how this affects mental well-being. Working with arthritis patients, he found that those with a more common, more socially understood disorder – osteoarthritis, for example, as opposed to fibromyalgia – tend to disclose
To explore how this personal decision can play out in everyday life, Arthritis Today asked three people to share how they told others. Read their stories – and what psychologists have to say.
At age 25, Sally* is a successful public relations and marketing manager in Charlotte, North Carolina, who doesn’t let her rheumatoid arthritis (RA) stop her from running, biking and playing tennis. “I’m
pretty athletic. I played three sports in high school and field hockey in college,” she says.
Diagnosed at age 20, Sally experienced periodic flares for a couple of years but is now enjoying a remission. “I have it in my small joints: fingers, wrists, toes, elbows. Every now and then I have a flare and my toes will be stiff, or one finger is really irritating,” she says.
Sally finds the arthritis help and support she needs from telling only family and close friends, including her boyfriend of five years. Beyond that, it’s just easier to keep mum about her condition when she’s
around most other people. “It isn’t something I want to broadcast,” she says. “I just don’t want to be judged differently.”
Thankful that her arthritis is manageable at this point in her life, Sally feels all the more confident of her decision not to share her condition with her boss and co-workers.
“It’s not necessarily that I am hiding it from them. If it came up, I would be open and talk about it. But it’s not something I am going to go out of my way to tell them about,” she explains. “I don’t want a stigma attached to who I am in the workplace.”
Sally acknowledges that her decision to remain quiet with her employer could change if her condition worsened. “I feel very lucky,” she says. “It would be a totally different story if my RA was more severe.”
An expert says: According to Lumley, it’s understandable that Sally would opt to remain quiet about her condition, given that it’s manageable at this time, because it’s generally true that the stage and severity of your disease determines your decision to share.
“For a lot of people, when it hurts to shake hands or open a jar, they start to develop strategies to share their condition with people,” he says. “But when it’s only an internal experience, a lot of people choose not to talk about it.”
Paramedic Fire Fighter Rick Williams remembers nearly 10 years ago when throbbing pain in his hands would regularly awaken him at 2 a.m. The pain sometimes meant he couldn’t do his job the way he once had. “On
the fire grounds, I would often be the backup person instead of working the nozzle (of the hose),” recalls Williams, 50, of Silverton, Ore.
It grew increasingly difficult for him to administer shots to sick patients. Even recreational activities with his firefighting buddies were tough to do. “We play volleyball, and I couldn’t set the ball,” he says.
A self-described “tough guy,” Williams brushed the pain aside, electing to take an over-the-counter pain reliever until, at his wife Karen’s urging, he scheduled a doctor’s appointment.
“It probably took four or five months for me to decide to go to the doctor,” says the father of three and grandfather of six. “I thought, ‘I can work through this.’”
When he was diagnosed with RA, Williams was relieved to know what had been causing the pain, but still didn’t share the condition with his fire chief and fellow firefighters. He worried how it could affect his job status. “At that point I had at least 11 years until I could retire,” he says.
He found he was more open at his church, where he was no longer able to play guitar in one of the music groups. “People got to know about my RA because I was having to back off activities that I’ve always done,” he says.
It took more than a year of trying different medications for Williams to feel that his arthritis was under control. He found the most success with a biological drug, which he continues to use today. With his arthritis better
controlled, he felt more confident about sharing the news with those at work.
“I’m up front with the folks here at the station,” says Williams. “It’s been helpful in some regards, because they will come up to me and say, ‘Hey, I have a friend who was just diagnosed with arthritis,’ and it’s a good way to educate them on the medications and how they’ve helped me. It’s also opened up the communication lines with other friends and patients, too.”
An expert says: “If people know what’s going on with you, they can be more tolerant and supportive of you,” says Ken Wallston, PhD, professor of psychology in nursing at Vanderbilt University in Nashville.
“And you generally feel better with social support. If you’re having a bad day, for example, people understand and they may be more likely to give help.”
Seeking people who have struggled with health issues themselves, even if they’re not the same as yours, can prove helpful. “Everybody has something health-wise - or knows someone who has something,” says Wallston, who has studied the disclosure of health issues for 40 years. “Everybody has to cope with something.”
Jessica* has only known life with arthritis. She was diagnosed with juvenile rheumatoid arthritis (JRA) and uveitis (inflammation of the eye that can lead to blindness) at nine months old.
Two years ago, Jessica had surgery on her left eye, which caused her vision to worsen. A recent flare caused additional vision loss, but she continues to see well with corrective glasses and soft contacts.
“The people who I am closest to in my life – they know [I have arthritis],” says Jessica, 24, now living in New York City. “But I don’t want to talk with everyone about it. I’ve looked into support groups, and considered joining, but I don’t really feel the need to discuss it with other people because I feel OK with it myself.
“When I have told people, it always requires a long explanation, and I hate to go through it again and again,” she says. “I think as long as you have that core group who knows, you’re OK.”
She admits that she has butted heads with her mom over her decision not to tell people. “My mom doesn’t quite understand why I don’t tell more people. She tells all of her friends, and I get mad at her about it because I don’t necessarily want everyone knowing,” says Jessica. “I try to be patient with her. I know she just wants to make sure I have someone to confide in.”
Jessica says she won’t be sharing it with her employer anytime soon. “I don’t want them to think that this is a disability,” she says, adding that when she needs to see her rheumatologist she tells
work only that she’s going to a doctor’s appointment. “On a day-to-day basis I am pretty good. Sometimes it’s hard to grip things first thing in the morning. But it’s not debilitating –
knock on wood, because I know that could change at any time.”
An expert says: As Jessica has discovered, keeping quiet can put a strain on relationships when a loved one has differing opinions about whom to tell. There can indeed be relationship implications should you decide to not tell family or friends who, if they someday do learn of your story, wonder why you didn’t say something sooner. “They may ask, ‘Why did you wait so long? Don’t you trust me?’” Lumley says.
While she may not be as forthcoming as her mother wishes her to be, Jessica has acknowledged that she shares with those closest to her, which is a smart move. Jessica could deepen her relationships if she pushed herself a bit out of her comfort zone, says Lumley, who believes people on average tend to do more hiding than they should.
“Challenge your fears,” he says. You’re likely to be pleasantly surprised that you’re accepted and loved just the way you are.”
What To Do When Your Friends and Spouse Are Healthy – And You're Not
Use these solutions to reach out to help healthy spouses and friends who don't understand your arthritis pain and fatigue.
By Dorothy Foltz-Gray
As if the pain, fatigue, fluctuating symptoms and limitations of arthritis – no matter what type – weren’t enough, you may also have to cope with changing relationships. Family and friends may underreact, overreact or make insensitive comments, making a tough situation even more painful. If your arthritis diagnosis is affecting your relationships, try these strategies to keep them strong.
Needing help with things you used to do yourself: “It’s hard to say, ‘I want to do this. Can you help me?’ Or to hear your spouse to say, ‘I can’t help you all the time,’” says T. Byram Karasu, MD, chairman of psychiatry at Montefiore Medical Center in the Bronx, N.Y.
Try this:“Take your spouse to medical appointments,” says Dr. Karasu. “Most don’t understand the limitations of arthritis. It helps to hear those from the doctor.” Once your partner understands your condition, you may feel more confident asking for help, and he may be more willing to offer it.
A helicopter spouse: Your husband or wife may constantly hover and nag you to remember medications or avoid overexertion.
Try this: Gently remind him that taking medicine, keeping medical appointments and exercising are your responsibility, not his, says Tina Tessina, PhD, author of Money, Sex, and Kids: Stop Fighting about the Three Things That Can Ruin Your Marriage (Adams Media, 2008). “That will make you both feel better.”
Social isolation: Your biking/tennis/running buddy no longer calls. “Friends may move away because you can’t do the same things they do,” says Dr. Karasu.
Try this: Explain your limitations, but let them know you still can sometimes do less strenuous activities – for instance, doubles tennis instead of singles, or biking three miles instead of 15. If you're not up to it, suggest other activities, such as getting together for dinner or a movie.
Goodwill burnout: No one wants to be around someone who talks about his problems all the time.
Try this: Ask about her life, listen attentively and be empathetic. “Genuine friendship is not using someone for a purpose,” says Dr. Karasu. “It’s emotional intimacy.”
5 Tips for Managing Chronic Illness in a Marriage
How to prevent arthritis from straining your marriage.
By Dorothy Foltz-Gray
No matter how good your marriage, chronic illness can cause strains between you and your spouse. But there are practical steps both spouses can take to help ensure that illness doesn’t become a wedge between them. Health professionals offer these tips for keeping marriage strong:
Share information. The person with arthritis needs to inform her spouse, to get him accurate information about her illness and to find support groups that he can join or that they can join
together, says Kathy Robinson, PhD, an associate professor of nursing at the University of North Florida, Jacksonville. And the well spouse owes it to himself and to the marriage to empathize. Like so many with arthritis,
Meredith Boyd of Atlanta knows getting on the same page is worth the work: “After all, my husband brings me the freedom of independence.”
Be sympathetic, not overly helpful.“If spouses are over-solicitous, the ill spouse can feel demeaned or powerless,” says Robinson, who works with families dealing with chronic illness. “She may be trying to recover from knee surgery, and her husband may simply be worried that she’s going to fall. Their goals clash.” In that case, it may be helpful to see a therapist or join a support group – sources that can help them get on the same page.
Prioritize intimacy. “Set up dates for sex, so that the person with arthritis can prepare by taking pain medication, by not taking on too much during the day and by building a sense of desire,” says Afton Hassett, an Arthritis Foundation-funded researcher who studies the psychology of rheumatological conditions at the Robert Wood Johnson Medical School in New Brunswick, N.J. “You need to make sex a priority and to talk about it.” Therapeutic lotions that reduce joint pain may also help someone with arthritis relax for an intimate date, especially if his or her spouse offers a massage with a loving touch.
Make caring mutual.“It takes ongoing communication and imagination to find ways to have as much give and take as possible, to acknowledge what each individual can do,” says clinical psychologist Barry Jacobs, at Crozer-Keystone Family Medicine Residency Program in Springfield, Pa. “Sometimes it may be mainly symbolic, but it’s a way to try to balance the scales.” To avoid silent resentment, make direct requests when you need something.
Take a break.If the spouse with arthritis needs a great deal of care, it’s important to acknowledge that and find ways the well spouse can get some respite, says Scott R. Beach, PhD, director of the Survey Research Program at the University of Pittsburgh and lead author of a 2005 study on caregiver behavior. “Use all the available service providers, if possible. Or if you have any family members who can help out for a few hours a day, use them, so the well spouse can get away. Don’t try to do it all yourself.”
Improve Communication With Your Spouse
Honey, did you hear me? Communicate well with your partner.
By Glenda Fauntleroy
You might believe you communicate well with your spouse or partner, but couples don’t always relay messages to their loved ones as well as they think, and an illness like arthritis can complicate communication even more.
According to a study published last year in the Journal of Experimental Social Psychology, when one person speaks to his or her spouse, the speaker assumes the partner has all the information the speaker has, and wrongly believes an explanation isn’t necessary – what the study authors called the “closeness-communication bias.” Married people tend to give even strangers more details than they give their partners.
“A lot of our relationship misery comes from expecting our partners to know what we’re feeling without having to say it,” says psychologist Jeffrey Bernstein, PhD, author of Why Can’t You Read My Mind: Overcoming the 9 Toxic Thought Patterns that Get in the Way of a Loving Relationship (Da Capo Press, 2003).
“When communicating with your partner, stop and take the time and effort it takes to see things as others see them,” says lead study author Kenneth Savitsky, professor of psychology at Williams College in Williamstown, Mass. “Does he or she share your same perspective?” Couples are especially prone to egocentric communication, and failing to consider a partner’s view, he adds.
Keeping communication a two-way street is key, especially for couples dealing with pain or limitations.
“In couples where one is coping with a chronic illness, it’s important to keep an open and honest dialogue,” says William Steele, PhD, a relationship therapist in Indianapolis and former clinical director of the LDS Hospital Pain Clinic in Salt Lake City. A partner with an illness may become hesitant to express what he or she is really feeling for fear of being seen as a chronic complainer, says Steele.
If your arthritis is getting in the way of good communication with your partner, use these strategies to help you talk about it more effectively.
Show your own compassion. “Know that your spouse is hurting, too, but it’s a different kind of hurt,” says Bernstein. “He may feel incredibly helpless, so [let him know that] his just being there is helpful.”
Be brief. A long monologue may overwhelm your partner and cause him to shut down, Steele says. “Keep your message to three phrases or sentences.”
Cut toxic language. Remove negative phrases such as, “you always do this …” or, “you never think of doing that ...” from the discussion.
Encourage active listening. Ask your partner to make eye contact, ask questions and repeat what you’ve said, Steele suggests. “Ask him, ‘how do you interpret what I just said?’”
Try laughter. Maintain a sense of humor with your partner, and don’t hold back your smile, Bernstein says.
A Healthy Marriage Is Good Medicine
A solid marital relationship can help reduce rheumatoid arthritis pain.
By Mary Anne Dunkin
When it comes to living with rheumatoid arthritis (RA), a good marriage may be good medicine, according to study results. In the study, published in The Journal of Pain, researchers surveyed 255 people with RA. Based on their responses, study participants were grouped in one of three categories: unmarried, in a distressed marriage and in a non-distressed marriage. After controlling for disease severity and demographic variables, scientists found that people with RA who were in a non-distressed marriage had less pain, and less physical and psychological disability – measured by mood and tension – than those who were unmarried or in a distressed marriage. Those who were not married had more pain and psychological disability – about the same levels as those in distressed marriages.
“While we often hear about the health benefits of being married, what we are seeing here is that it is not just being married that counts,” says Jennifer Barksy Reese, PhD, a postdoctoral fellow at Johns Hopkins University School of Medicine in Baltimore, Md., who led the study. “The main take-home finding is that the benefits of being married seem to really depend on the quality of the marriage. Our research suggests that only being in a high-quality marriage would have those health benefits."
So if your marriage isn’t the greatest, does that mean you are doomed to marital unhappiness and more disability from your arthritis? Not necessarily, says LeslieBeth Wish, a psychologist and a licensed clinical social worker specializing in women's issues. Even if you’re having marital troubles, better times – and less pain and disability – could be in your future. “Every single long-term relationship has something that can be improved,” she says. “Research shows that even people who are happy in long-term marriages report fairly long patches of up-and-down times. Just because your marriage isn’t great right now doesn’t mean you are doomed to be unhappy.”
One step toward a better marriage could be drawing your spouse into helping manage your arthritis, she says. “Working with your partner to handle your illness will automatically address issues such as communication, empathy, patience, learning to ask for help or learning to tell someone what is wrong. These are critical tools in a relationship.”
If you have had trouble communicating with your spouse or find it difficult to ask for help, Wish recommends deferring to your doctor’s advice. For instance, “My doctor told me some ways couples can work as a team on this. He says we need to get used to telling each other what’s wrong and asking if we think the other might be in trouble.”
She also recommends coming up with a scale – say one to 10 – to let your partner know how you are feeling or to prepare him when broaching difficult issues. For example, before telling your spouse that your son failed a test, give him warning by saying, “I need to tell you a problem with [our son] that ranks about five or six,” she says.
Taking steps to improve your marriage could pay off in unexpected ways. “If you are in a distressed marriage and are able to work on it and improve your marital quality, we think that would also have beneficial effects for other aspects of your health, too,” says Reese.
Try these other tips from Wish to improve a bad marriage – or strengthen a good one.
• Remember what you love about your partner. Remind yourself what first attracted you to your spouse, and why you fell in love and chose that person to spend your life with.
• Make sex fun. Try having sex in a different room or, if it doesn’t cause you pain, in a new position.
• Be a team player.Look for tasks or entertainment that you can do together. “Whether it’s folding laundry together or deciding where they want to go to dinner, when couples work as a team they feel better and more connected to each other,” says Wish.
• Focus forward. When arguing, avoid rehashing old issues. Instead, look for solutions and how to do things differently in the future.
• Keep in touch. Don’t let more than a day or two go by without touching or kissing your spouse. Slip him a sweet note or email, just to say you’re thinking of him.
• Do something nice. Do a chore once in a while that you know your spouse particularly dislikes.
• Have fun. At least every two or three weeks, do something fun together, whether it is a trip to a flea market or a football game, or sharing some hobby that you both enjoy.
Dating With Arthritis
Don't let arthritis keep you from dating, love, sex and intimacy.
By Anne Krueger
It is challenging enough to talk about intimacy and sex with a spouse or longtime partner. But if you are single and have arthritis, it can be super intimidating to even try to date. Here’s how to look for love in all the right places.
1. Love yourself first. “When you’re a little girl, you want to grow up and find that perfect man and live happily ever after,” recalls Elizabeth Counter, 26. “But after I got systemic juvenile rheumatoid arthritis, I was convinced nobody would want me. Why would they? I’m damaged goods.”
That kind of negative thinking is common among those with arthritis – and it isn’t sexy to anyone, says certified sexuality educator Cory Silverberg, co-author of The Ultimate Guide to Sex and Disability: For All of Us Who Live with Disabilities, Chronic Pain, and Illness (Cleis Press, 2003). “It isolates people and keeps them from having healthy relationships.”
Counter says that her mom always told her that she was more than a disease, but until she started believing it herself, she was reluctant to date. “I decided that feeling sorry for myself wasn’t very attractive,” she admits. And once she stopped seeing herself as a sick person, others did, too.
2. Find others who really understand chronic disease or disability. Online dating is hugely popular, and services such as www.disableddatingclub.com and www.enablelove.com specialize in connecting disabled singles. Silverberg doesn't recommend any particular online dating site, but says such sites, in general, can offer an advantage. “What’s nice about online dating is that you can bond because of your personality and communication before you have to deal with the physical,” he says. (As always, follow common-sense safety rules when getting together with anyone you’ve met on the Internet.)
Don’t want to meet someone on the web? Sign up for the Arthritis Foundation’s Arthritis Walk or train for a marathon with the Foundation's Joints in Motion team.
3. Practice an honest, but lighthearted, explanation of your disease. People should be talking more about their arthritis, says James McKoy, MD, a rheumatologist at the Kaiser Permanente Medical Center in Honolulu, Hawaii, because talking normalizes it and puts any issues on the table. But, of course, you may not want to dump your diagnosis on somebody on the first date. Instead, set a date to tell your potential mate about your arthritis, and plan your approach.
“Doom and gloom is not the way to go,” says Silverberg. “You want to be realistic about any issues you have, but focus on how you’re living with it. You are living with it. You’re not dead – and you’re not contagious!”
Counter has learned to describe her symptoms in terms people can relate to – like saying she often feels that soreness people have after a hard workout at the gym. “It may be uncomfortable and painful sometimes, but I want people to know that doesn’t mean I can’t still have a normal – and sexual – life!”
4. Discover what makes you amazing and flaunt it. We’re all very complex people, full of a variety of strengths and skills, says Silverberg. He suggests that developing a passion will help your love life: If you show someone you’re a fantastic cook, a killer card player or a super cyclist, it will keep both of you from focusing on whatever weakness your disease causes.
5. Be open to developing a relationship you already have. Whether you have arthritis or not, love can work in mysterious ways – so don’t ignore romantic signals from or feelings for people you already know. Counter fell in love with a friend – someone who had seen her at her best and worst long before they started dating.
“Sometimes the best person is right there in front of you. He was a great friend, and he knew about my condition but treated me like I was normal. So it was easier to become intimate,” she says. Now she tells people: “Don’t give up on love.”
How to Tell People You Have Arthritis
Learn how to succinctly and comfortably discuss arthritis.
By Heather Johnson Durocher
How do you tell someone you have arthritis? Information about the condition isn't easy to convey or explain. Arthritis is a complex condition, but there are ways to discuss it comfortably.
Perhaps you’ve heard the expression, “elevator speech,” which is a concise summary of what you want to say that takes no more time than an elevator ride. OK, so maybe you're not exactly in an elevator when it happens. So how best to explain to someone your arthritis – succinctly and confidently – when you have only a few moments?
Consider these arthritis information tips from Mark Lumley, PhD, professor and director of clinical psychology training at Wayne State University in Detroit, Mich.
Giving specifics.Decide how specific you want to be when you attempt to explain arthritis. Perhaps you only recently were diagnosed and still have much arthritis information to learn yourself. Rather than go into details, try saying something along these lines: “I have something going on with my hands. I'm seeing a doctor about it.” Or “I have pain in my hands. I take medication for it.” If you're comfortable sharing more in-depth arthritis information, you could start with, “I have an autoimmune disease. This means...” and explain what you know.
Use your voice. Watch your tone of voice. Do you present the information matter-of-fact or as a source of embarrassment? Whichever way you go, the person will pick up clues from you and respond accordingly. Lumley suggests you make eye contact with a bit of a smile and confidence.
Think of the other person. Empower the other person (and yourself at the same time) by inviting him or her to ask any questions about your condition. “It empowers them to be open to you and shows you how to be confident, as opposed to communicating, 'I'm ashamed. I'm insecure.'”