JointHealth™ insight   January 2007

This issue of JointHealth™ monthly is all about family. In this issue, we present information on communicating effectively with family members, provide tips for spouses of people living with arthritis, and discuss the latest research into intimacy and arthritis.


Arthritis and family: the importance of healthy communication

An arthritis diagnosis can affect every area of your life, including your family. It is critically important, and often very difficult, to create and maintain open communication with your family about your disease. Not being open about feelings, needs, worries, and fears can lead to isolation, resentment, and depression for people living with arthritis and their families.

Communicating with partners
The research community has recently begun to examine in detail the powerful effects that arthritis can have on relationships. Recent studies are confirming what many people with arthritis have long known from personal experience. A diagnosis of arthritis can have a tremendous impact on all areas of a person's life, and this certainly includes relationships with partners.

Recent studies have also shown that people with arthritis who are in strong relationships tend to have lower levels of physical disability. We know, therefore, that working on your relationship as a whole, by improving your communication and strengthening your systems for supporting one another, can actually improve your health.

One of the most important things to learn when you are living with a chronic illness is how to ask for support or help. Support can take many forms, including physical assistance, emotional support, or information and advice. Many people have difficulty asking for support or help, especially if they are used to being very self-sufficient. Practice asking your partner for things you need, and ask your partner to practice responding in a way that does not make you feel guilty for having to ask.

Work on maintaining open communication with your partner about how you are feeling physically. Allen Lehman, a PhD Candidate at the University of British Columbia, recently found in his research on more than 200 couples affected by RA that about one-third to one-half of spouses overestimate or underestimate the severity of fatigue or pain the person with RA experiences. People living with arthritis whose spouses underestimated their fatigue levels were more likely to report poorer social support from their partners.

It is important to ask questions about what your partner is finding challenging about supporting you with your arthritis, and make clear statements about what types of support are helpful to you, and which are not helpful. If possible, try to have these discussions when you are feeling calm and loving towards your partner, and not when you are tense or frustrated. You will probably find that speaking openly and honestly is much easier when you are not upset or angry.

Maintaining good, healthy communication is key to keeping your relationship healthy and functioning. Studies indicate that the state of the pre-arthritis relationship has a profound impact on the post-arthritis relationship. Simply put, stronger relationships fare better than weaker ones when arthritis is introduced into the mix. It makes sense, then, to work to make all of the areas of your relationship the best they can be.

Communicating with children
For many parents, the most difficult thing about learning to live with arthritis can be adjusting your expectations of yourself as a parent. It can be tremendously difficult to accept that there are some things that you will no longer be able to do in the same ways. You may feel reluctant to speak openly with your children about your disease for fear of frightening them.

Maintaining an open, honest relationship with children is vital when you are living with a chronic disease. Children need to know what to expect, and need to feel that it is safe to discuss feelings and anxieties they may be having about your health.

Many people have found it helpful to come up with a system for keeping your family aware of how you are feeling. Because many people with arthritis experience symptoms which are invisible, like pain and fatigue, families, including children, can have a hard time knowing how you are feeling.

Here are two examples of strategies for communicating with your children:
  • Establish a number scale, from 1 (none) to 10 (extreme), to rate your pain and fatigue. If your children know that you are a 2 today, they'll know that they can expect a more cheerful, energetic parent; if you are an 8 or 9, they will know to ask for less, and you won't feel guilty for saying "no".
  • If your children are young, consider making a chart with happy and sad faces. On days when your symptoms are worse, display the sad face; when you are feeling better, display the happy face. Children can look at the chart through the day and be reminded of your pain and fatigue levels


Advice for partners of people living with arthritis

Partners of people with arthritis face many unexpected challenges. Very often, an arthritis diagnosis comes as a shock, leaving both the diagnosed person and their spouse unprepared and unsure of how best to move forward.

Spouses of people living with chronic disease are often forced to adjust expectations, roles, and responsibilities within a very short period of time. It is important to realize that chronic disease affects both people in a partnership, and partners need to take responsibility for their own well-being; after all, you can be of very little help to your partner during his or her illness if you're not able to take good care of yourself.

Here are some things to consider when your partner is living with arthritis:

Take good care of yourself
Make a list of things you love to do, or things that you have always wanted to do or try. These could be simple, small indulgences, like getting a massage, going for a weekly swim, or taking enough uninterrupted time alone each day to read the newspaper. It could also be something more complicated, like traveling alone through Mexico, or learning to ride a motorcycle.

Once you've made your list, choose one or two that you think may fit into your life at the present time. Whatever you choose, make a commitment to yourself to make it happen. You will be a better support person and care-giver if you are happy, relaxed, and fulfilled.

Accept your feelings
Know that you are not superhuman; do not expect yourself to be perfect, and do not punish yourself for feeling angry, resentful, or disappointed about the impact of arthritis on your relationship.

Accept that your feelings are normal and understandable. You have experienced a tremendous change, and the roles in your relationship may be shifting quickly and radically.

It is important to discuss your feelings. Your partner is probably the ideal person to talk to, but if that is not possible, or if you feel uncomfortable, consider speaking with a close friend, family member, or trained therapist.

Whoever you choose to speak to, remember that it is very important to share your feelings honestly. Keeping difficult feelings to yourself could result in becoming withdrawn and depressed. You need to be as healthy and happy as possible when you are facing the challenges a chronic disease presents to a relationship.

The right kind of support
Ask your spouse which types of support are helpful, and also which types are not. Research has shown that what one spouse imagines to be helpful, the other spouse may not. When a partner who thinks they are being supportive is not seen as supportive, notes Allen Lehman, it is more likely that the person living with arthritis will report poorer well-being. Listen to your partner, and try to give the support requested.

For example, your partner may want you to always do the tasks around the house which involve heavy lifting, like taking out the garbage, lifting loads of laundry, or bringing in groceries. You may have been thinking that it was enough to be available to respond to individual requests, not understanding that having to ask continually may make your partner feel like a "nag".

Once you have had an open, honest discussion about helpful types of support, you will be able to understand how best to help.

Acknowledge your losses, and your gains
You may feel as if your spouse's arthritis diagnosis has changed everything, and that might be true. Old roles—breadwinner, sexual partner, co-parent—might not be as easily defined, and your spouse may be less able to play an active part in many areas of your family life.

It is important to acknowledge to yourself what you have lost. You may find it helpful to speak with someone, like a close friend or a therapist, about what you are feeling.

Remember that, while you have probably suffered losses, you may also be able to find that some good has come from your partner's disease. You may have experienced deeper communication, a strengthening of your commitment, a heightened awareness of good times. It is as important to acknowledge and discuss these positive developments as it is to be honest about your losses. In fact, recent research reveals that people with arthritis who believe that something good has come from their experience with disease report less physical disability over time.


Intimacy and Arthritis

Recently, several studies have examined the impact that arthritis can have on intimacy and sexuality within relationships. One recent study, conducted by Dr Gillian Grundy, found that joint pain, fatigue, fear, and reduced physical function profoundly affected sexual function, frequency of intercourse, and sexual satisfaction.

For many couples, intimacy and sexuality are profoundly important. Arthritis can certainly present challenges in these areas, but there are many ways to lessen its impacts and continue to enjoy a healthy, active sexual life.

Depending upon which type of arthritis you have, timing is very important when planning for intimacy.

For people with inflammatory arthritis, early morning may be the time of day when symptoms, including joint stiffness, are at their worst; it may make sense, therefore, to plan intimacy for later in the day.

People with osteoarthritis, on the other hand, may find that joint pain is worst towards the end of the day; in that case, intimacy might be most comfortable in the morning hours.

As with any physical activity, there are some simple steps you can take while preparing to be intimate that may help prevent or minimize discomfort.
  • Try taking a hot shower or bath before lovemaking to relax joints and muscles
  • Take your pain medication 30 minutes before you plan to be intimate; that way, they will start to work right when you need them
  • Ask your partner for a gentle massage
  • Stretch out, as you would when preparing for any type of physical activity.
Choose positions which put the least amount of strain of your affected joints. Place pillows under knees, hips, and any other joints you are worried may be strained. There are several books that provide helpful tips about positions to protect specific joints, including "Rheumatoid Arthritis: Plan to Win" by Cheryl Koehn.

For many couples, accepting that intimacy will need to be more planned and less spontaneous is one of the first steps towards adapting to life with arthritis. Because timing and preparation may help to make intimacy more enjoyable when you are dealing with arthritis, you may need to change how you think about intimacy.

Discuss your need for planning, timing, and preparation openly and clearly with your spouse. You will probably find that, when presented with simple, enjoyable ways to plan and prepare for intimacy, your spouse will be more than willing to accommodate your needs.


Over the past 12 months, ACE received unrestricted grants-in-aid from: Abbott Laboratories Ltd., Amgen Canada / Wyeth Pharmaceuticals, Arthritis Research Centre of Canada, AstraZeneca Canada Inc., Bristol-Myers Squibb Canada, GlaxoSmithKline, Hoffman-La Roche Ltd., Merck Frosst Canada, Pfizer Canada, and Schering Canada.

ACE thanks these private and public organizations.