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How to Talk About Your Fibromyalgia Diagnosis With Those You Love

Neck_Pain_400Fibromyalgia affects up to 12 million Americans, but if you’re one of those who suffer, it is often difficult to explain the painful, exhausting symptoms to your loved ones. Here are 10 questions to ask yourself — and your partner — to keep your marriage strong, even in the face of a tough diagnosis. From The 10 Best Questions for Living with Fibromyalgia: The Script You Need to Take Control of Your Health.

1. When were we most successful in communicating with each other in the past? How can we use the same methods now to deal with this illness together?

Fibromyalgia is like an uninvited houseguest that’s here to stay. Your current communications may be hampered by unspoken feelings of anxiety, anger, or anguish about the daily reality of living with fibromyalgia.

A positive start is to reflect on the past good times. Talk over these times and remember how well you communicated.

Longtime partners often assume they can read each other’s minds. This can be a fatal flaw and shut down good listening. Talk in specifics with frequent “I” and “we” statements (“I think we should…,” “I feel we need to consider…”). Use openers like, “I hear you saying… ,” “Is that right?” or “Tell me more.” Keep your facial expressions open and your body language positive.

Harriette Cole, author of the nationally syndicated advice column, Sense and Sensitivity, and a creative director for Ebony magazine, suggests: “It’s best in the beginning to ask welcoming questions. Do your best not to be hostile, condescending, or doubting… Ask your questions honestly and without judgment and not like an inquisition.”

2. What areas of our lives must we maintain to ensure as much normalcy as possible?

You need a cocoon of normalcy in order to function on a daily basis. Author and psychotherapist Rachael Freed says, “Everyone outside the patient wants ‘normal’ to return because it’s so threatening for them.”

But having a chronic illness becomes the “new normal.” As fibromyalgia expert at Oregon Health and Science University, Dr. Kim Dupree Jones, states, “Most people who get fibromyalgia start to get it in their thirties or forties during their most productive years in the workplace and raising families.”

Well spouse Gregg Piburn advises, “For the partner, chronic illness can become like an ongoing spectatorship. It’s no longer our problem; it’s her problem. It’s very important to band together and see the ‘Intruder’ as a common enemy. If both partners open up while in the foxhole of the war against the ‘Intruder,’ they can’t help but become tighter as a couple.”

Solve your problems together. Your life and household responsibilities must continue, but decide which ones are critical needs (like paying the bills) and which ones are the “wants” (continuing your daughter’s flute lessons). The daily bottom-line question, “What’s for dinner?” isn’t going away.

Normalcy also soothes frazzled nerves and the raw edges of relationships. For example, keep up e-mail correspondence with long-distance friends or an online support group.

3. What role changes in our partnership do we need to make to get through this thing together?

Your past roles and the division of labor in your partnership may now be turned upside down. In essence, you have two new job descriptions to write. This is a critical task that should not be overlooked.

Couples’ misunderstandings or unspoken assumptions about roles are a breeding ground for festering guilt, resentments, and even lifelong animosities toward each other. Clarify your expectations for each other. The well partner may need to cook or do more household chores. Longtime fibromyalgia patient Dot Gerecke in Horsham, Australia, advises, “Ask for help with the chores, especially on your ‘off days.’”

4. What has this been like for you?

This simple question may uncover a hornet’s nest of complaints, a flood of feelings, or no new information at all. It’s only understandable that some people who live with constant pain can overlook their partners’ feelings and experiences.

Dr. Kim Dupree Jones, explains, “It’s so hard for the spouse because the person with fibromyalgia can no longer do many of the things that they once enjoyed together, like sports, running, and other physical activities.” Gregg Piburn agrees with his story, “In the 1970s, I bought Sherrie running shoes and cross-country skis. In the 1980s, I bought her a recliner chair and cordless phone.”

Relationship advisers Dr. Scott Peck and Shannon Peck of Solana Beach, California, comment, “There are many ways to bring the empowering combination of kindness and love into your marriage. One way is to ask simple, direct questions.”

This Best Question works well for many occasions, so ask it often.

5. How can we help each other deal with the stress in our lives?

You may be facing a double-dose stress whammy. Chronic illness strains even the best relationships.

Many couples experience internal misunderstandings, self-pity, anger, and financial and sexual problems. The ill partner may become disabled. All of this is added to the pressure cooker of routine work, family, and financial demands.

Maryland licensed clinical social worker Mark Gorkin says, “Caregivers frequently cycle between anger, due to the unreasonable demands of caregiving, and being in a state of chronic guilt and stress for not being able to do it all.”

The only way out is to work together as a team. Identify what’s causing each of you the greatest stress and then talk over what you can practically do to alleviate some of it. Some friends or family members might gladly help out, too.

6. How can I show you that I love you?

Welcome to the “Hugs Department.” There’s an old saying that “hugs are the universal medicine.” Even if you are struggling in this relationship, saying, “I love you,” or giving small tokens of your affection can mean the world to either partner.

7. How can we still enjoy being together and have fun?

Don’t let fibromyalgia rob you of a sense of humor and fun. Sure, you probably can’t do all the things you could before, but that doesn’t mean you can’t do anything that’s fun or at least talk about what you will do another time.

What’s something silly or easy that you two can do together once in a while just like the old days? Get your favorite take-out food, watch a stupid movie together, take a walk together, or see old friends.

Being sick is no fun, but laughter can go a long way in strengthening the good glue of your relationship.

8. What can I do to help you now and later?

It might just be little things, like doing household chores or errands, or helping with child care duties. Sometimes a partner secretly needs more reassurances despite putting on a brave front.

The basic gender disconnect is that women don’t have much practice in asking for help and men only know how to solve problems. By asking each other this question, you can explore your true needs.

9. Do we need professional counseling or other help for our marriage?

It’s a sign of strength to know when you need outside help to overcome your differences or communication breakdowns. There is nothing to be ashamed of if you decide you need marriage counseling, want to join a support group, or decide to meet with a therapist. When one partner is sick, it puts a tremendous burden on the relationship, even if it is a top-notch one.

10. What old rules do we need to break? What new rules do we need to establish?

Most relationships have unwritten but inviolable rules that govern everything from who takes the garbage out to how nutritious dinner has to be. This is the opposite of Best Question 2. Now we’re talking about what you do want to change.

Typically, the old rules involved household chores (who does what and when), favorite routines that need acceptance or permission (Friday night poker games or shopping sprees), and the little picky stuff (neatly folded laundry).

Figure out together which rules to keep or toss to match your current circumstances. A household’s unwritten and unspoken rules can be a source of unspoken assumptions, misunderstandings, and even great stress between partners. Call a truce on judging each other’s past actions, wipe the slate clean, and start over as a team effort.

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