Fibromyalgia Jeopardizes Relationships

FIBROMYALGIA syndrome (FMS) doesn't exist in a vacuum ¹. FMS can cause profound changes in the life of the person diagnosed, and the lives of family and friends. The changes may include loss of income, independence, good health, and future plans. Changes in lifestyle often makes those affected by fibromyalgia feel isolated, unable to express their emotions, needs, and experiences with others.

There can be a lot of strain on relationships between people with fibromyalgia and caring ones. According to one study, in most FMS patient social networks, the personal needs of the patient are fulfilled by just one or two people—often a spouse or a physician ². In addition, FMS patients are less likely to take the initiative to meet new people or maintain current relationships ³.

Family and friends may become exasperated because they don't know how to respond to the fibromyalgia. Making matters worse, people with FMS have a tendency to shut out family and caring ones because of the pain ⁴. Under these conditions relationships are in jeopardy.

In order to prevent relationships from deteriorating, you need to express your emotions, needs, and your limits, while being sensitive to the listener. Finding the best way to communicate can be a difficult process, but the rewards are worth your effort. Regardless whether you care about someone with FMS, or you have FMS, you are responsible for making your relationships positive despite fibromyalgia.

Keep the Lines of Communication Open

Now that fibromyalgia is part of your life, you may be feeling aggrieved. Although your partner may look perfectly healthy, he or she can no longer do things that were once possible in the relationship. Talking about the changes in your lives may only produce feelings of anger, guilt, and defensiveness. It's normal for these feelings to emerge. But in order for your relationship to survive and flourish in spite of fibromyalgia, feelings must be dealt with, by both parties.

Unfortunately, fibromyalgia has played a role in the breakup of many committed relationships ⁵. Fractures in a relationship can be prevented if the partners have lots of knowledge of the syndrome and excellent skills in talking things over ⁶.

Although you may have taken a variety of courses in school, chances are you were never really taught how to communicate and work out disagreements with the person you love. The following principles can assist in the development of positive and clear communication so that misunderstandings and defensive responses are kept to a minimum. These two principles should facilitate conversation not only about fibromyalgia, but other areas as well. "The first principle entails the use of "I" statements; the second involves the statement of fears or concerns ahead of time" ⁷.

When preparing to discuss issues in your relationship, pick a time when you can give each other full attention. Avoid making accusatory remarks. Instead, use "I" statements. "I" statements consist of saying the word "I" rather than "you" when talking about feelings, attitudes, and actions. "Using "I" statements can be one of the most effective ways of clarifying communication" ⁸.

For example, you are upset because your partner has been neglecting to help clean the dishes. If you say, "You never help me in the kitchen!" your accusation most likely will ellicit a defensive response from your partner. Your significant other may feel accused, blamed, and possibly even inadequate or guilty. It would be more effective to say, "I feel overwhelmed with kitchen responsibilities right now. Can you please help me clean the dishes?" The following are not "I" statements: "I really think you're purposefully trying to avoid doing the dishes." Or: "I feel you are being selfish and inconsiderate when you don't help me." In both these statements the "I" is used only to open an attack. The statements are an analyses of your partner's behavior rather than statements of how you are feeling ⁹.

A second communication approach is to state how you feel about what you are going to say before you actually say it. For example, if you are concerned that your partner will become angry with you if you say that he or she is still not helping you enough in the kitchen, try starting the conversation like this: "I have something very important to tell you, but I'm afraid that it might make you angry." Explaining your feelings in advance allows your partner to be aware of your concerns and monitor his or her own reaction during the conversation. Using this communication approach also helps prevent you from inadvertantly delivering your message in a harsh or critical tone.

If you treat your partner with love, respect, and courtesy when you communicate, your relationship will better withstand the challenges fibromyalgia places on it. The following ideas are additional ways you can nurture your relationship ¹⁰:

• Recognize that fibromyalgia has changed your life. If you are in a committed relationship, you probably have noticed that when one partner has fibromyalgia, both carry additional weight. The well spouse or partner may be required to take on additional responsibilities within the home and work longer hours to bring in extra income. The partner with FMS struggles with pain, fatigue, and managing to meet day to day responsibilities. Recognize and affirm each other's feelings about the changes in your life together. Make a list of what you have lost and express grief for each loss.

• Learn new ways to communicate. "Nothing underestimates the power of empathy" ¹¹. Find a way to talk about how FMS makes your partner feel. Perhaps you can create a ten–point rating scale (one being terrible and ten being the best your partner has ever felt) to describe FMS symptoms each day. This way, when you ask your partner to do something, he or she can respond by saying "I'm at about a four today. When I reach a six, I'll be happy to."

• Talk with your partner about sexual intimacy. Fibromyalgia symptoms can potentially affect sexual intimacy. You may be reluctant to talk about the changes FMS has caused in your sexual relationship. But frankly discussing your emotions, needs, and concerns with your partner can build trust and strengthen your relationship. Most likely you will need to find new ways of expressing sexual intimacy beyond intercourse. Massage, bubble baths, and cuddling, are just a few alternative ways of sharing intimacy. If fibromyalgia is causing difficulty in your sex life, you can ask your doctor for advice, or seek the help of a trained counselor who specializes in the area of sex therapy. In addition, there are many tastefully written, educational books available at your local bookstore, that can provide you new, creative ways to be sexually intimate with your partner.

• Adjust your expectations. Part of adjusting to life with fibromyalgia (as a well spouse, partner, family member, friend, or patient) is recognizing how FMS affects the expectations you have for your relationships. Take time and think about what behaviors and actions you expect from people in your life and from yourself. Is the kind of support you expect from your partner, family, and friends realistic? Have you communicated your expectations to others around you?

• Be prepared to let some friends go. Recognize that some relationships you have with family, friends, and co–workers won't be able to adjust to the changes fibromyalgia brings. For instance, the couple you skied with before your husband was diagnosed with FMS may no longer have anything in common with you. If you feel that you are doing most of the work to maintain a friendship, it is ok to quietly and gently let it go. When a friendship ends, it is important to grieve the loss and forgive. Finding forgiveness will help you begin new friendships and build stronger relationships with people who do continue to be part of your life.

• Emphasize what you cando rather than on what you cannot. Working through your adjustment to FMS in a spirit of optimism is beneficial to all involved. Try to remember what brought you together with your partner. Recapture whatever it was. Being spontaneous and playful with your partner will help you become closer to one another.

Communicating with Children

Children can't be fooled. They know when adults are in pain, stressed out, or are unhappy. If you don't explain to them what is wrong, they may imagine the worst. Let your children know what is happening and encourage them to ask questions.

Find ways to let your children help you at home. Tell older children that you can't do everything for them. Taking on additional responsibilities at home will help your children become more capable and independent as a result.

Recognize and affirm the emotions your children express. They may feel anger, grief and loss from the changes fibromyalgia brings. Showing your children ways they can express and let go their emotions will help them become happier, healthier individuals.

Ultimately, you want to reassure children that you love them. Spending quality time with your children and having fun together can help strengthen your relationship with each other.

Take Care of You

When faced with FMS, you need to take care of yourself physically, mentally, and spiritually. If you don't, you won't be prepared to contribute to the lives of others. The following are ideas to help ensure your life is filled with joy, satisfaction, and fulfillment ¹²:

• Grieve for your losses, and then allow yourself to dream new dreams.
• Deal with the past, and let it go. Make a tape, or write a letter to people you have grievances with and then throw it away. If that doesn't help, speak with a professional therapist.
• Make goals for yourself, and don't let fibromyalgia always dominate your life.
• Love, honor and value yourself. Living with fibromyalgia is often challenging. Remember to treat yourself well and take some quality time, just for you.
• Educate yourself about fibromyalgia. Information is empowering.
• Watch out for signs of depression, and don't delay in getting professional help when you need it.
• When people offer to help, accept the offer and suggest specific things that they can do.
• Establish limits for how you want to be treated by your partner.
• Seek support from others in your situation. There is great strength in knowing you are not alone.
• Be spontaneous and have fun together with your partner, family, and friends.

Obtaining Additional Help

If you are interested in seeking help for your family or yourself, there are many helpful resources available.

Professional counselors and support groups provide an opportunity for people with fibromyalgia and caring ones to meet others with similar experiences. Contact your local health clinic, social services office, and religious organizations to find out about chronic illness counselors and support groups in your community.

There are many books covering the topic of communication available at your local library and bookstores. One such book is Fibromyalgia: A Comprehensive Approach, written by Miryam Williamson. This book educates the reader about fibromyalgia, and provides useful tips and examples how to improve communication between family members coping with FMS.

The Internet is another resource where you can get helpful tips on communicating with your loved ones. For example, the WebMD website offers weekly columns and chat room discussions for people with FMS and caring ones. If you are a well spouse seeking online support, refer to Well Spouse Foundation's website.

Reflection

Fibromyalgia provides an opportunity to strengthen your relationships with those you care about. Using honest communication, showing empathy, and educating others about your needs can lead to healthier, happier, long lasting relationships.

2. PH Bolwijn, MHS van SantenÐHoeufft, HMJ Baars, S van der Linden, "Social Network Characteristics in Fibromyalgia and Rheumatoid Arthritis," Arthritis Care and Research 7, no. 1, (1994). (Return to text)

3. Bolwijn, et al., "Social Network Characteristics." (Return to text)

4. MJ Pellegrino, The Fibromyalgia Survivor, (Columbus, Ohio: Anadem Publishing, 1995). (Return to text)

5. Williamson, Fibromyalgia. (Return to text)

6. Williamson, Fibromyalgia. (Return to text)

7. L Barbach, For Each Other: Sharing Sexual Intimacy, (New York: New American Library, 1984, 109). (Return to text)

8. Barbach, For Each Other, 109. (Return to text)

9. Barbach, For Each Other. (Return to text)

10. SM Wells, "Communicating with Those We Love," <http://www.webmd.com> (3 June 1999). (Return to text)

11. RM Bennett, G McCain, "Coping Successfully with Fibromyalgia," Patient Care (1995), 5. (Return to text)

12. National Family Caregivers Association, "10 Tips for Caregivers," <http://www.nfcacares.org/tentipsf.htm> (21 April 1999). (Return to text)