Is your partner coping with the aches and pains of fibromyalgia?
These strategies can help your relationship thrive.
Fibromyalgia, a chronic condition marked by pain, fatigue, sleep issues, and cognitive disruptions, affects women disproportionally more than men — about 80 percent of fibromyalgia patients are women. And that means that many men are in need of education about the condition, along with coping strategies.
Jeffrey Gorelick, MD, an internist and clinical assistant professor at the Medical College of Wisconsin in Milwaukee, has an interesting perspective on this issue. Not only is he a medical doctor who specializes in treating fibromyalgia, but his wife, Lisa, has combated fibromyalgia symptoms for 29 years.
“It’s not always easy, but we have worked hard to manage the condition and have a solid relationship through the years,” says Dr. Gorelick.
1. Understand that it’s a real disease.
One of the biggest problems with fibromyalgia is that many people still don’t believe it exists. Not being able to outwardly see that anything is wrong with your wife or partner can make the condition difficult to accept, Gorelick says. “That’s why trust is so important. For the partnership to work, there has to be belief and trust in each other.”
2. Get educated.
One thing that can help you better understand fibromyalgia and fibromyalgia symptoms, suggests Gorelick, is to read up on the disease so you will know what your partner is going through. “Luckily, as a specialist in the disease, I already had this part covered,” he says, “but I suggest it to many of my patients.”
3. Find a good doctor.
Fibromyalgia treatments have improved greatly in recent years, and there are now several drugs that can be prescribed for fibromyalgia symptoms. But, there are still some doctors who don’t believe the disease is real. Considering this, one of the most important things you can do not only for your spouse’s health but also for your relationship is find a doctor who is a willing partner in helping find real solutions for dealing with the illness. “I was not my wife’s doctor, but we went to great lengths to find good specialists that can help her manage the condition,” says Gorelick.
4. Be flexible.
With fibromyalgia, plans can change, events can get canceled, and sometimes you may find yourself housebound when you had an important task to do. Gorelick has coped with these realities by keeping his plans flexible and going with the flow as much as possible. “One thing that’s true about fibromyalgia is that you’ll find out who your true friends are,” he says. “I never worried about losing friends over fibromyalgia though. To me, if they are our true friends, they’ll understand what we’re going through.”
5. Expect bad days.
Depression and mood changes related to a “bad fibro day” are common when your loved one has fibromyalgia. Again, you need to develop a mind-set that allows you to accept that these days will come. You’ll have good days too, so patience is key here. Help your loved one cope with the bad days in any way you can.
6. Find a support system.
Even the most understanding husband or partner is going to need his own support network of friends or family who can act as a sounding board for what he is going through. “I am fortunate in that I have a group of close male friends that I can speak quite openly to about the issues I am facing,” says Gorelick. “For others, a more formal support group might be more helpful.” Join the support group “Living with fibromyalgia and chronic illness”
7. Be independent.
It’s also very important to have your own interests and activities so that you are not always wrapped up in the world of fibromyalgia. “I am an extremely active cyclist and swimmer, and my wife has been very supportive of me continuing these activities,” says Gorelick. “It was our hope to be able to do these activities together as we got older, but unfortunately that hasn’t been the case.”
8. Be patient about intimacy.
Aversion to touch and low sex drive are two common fibromyalgia symptoms, and they quite naturally can be frustrating to the partner of someone with fibromyalgia. Work together to find out what kinds of touch feel good and what hurts — maintaining intimacy is vital to your relationship when possible, but you may need to be patient.
The key to staying together as a couple is keeping the lines of communication open.
Encourage your partner to let you know how she is feeling, and you need to express your feelings as well. By doing so, you’ll have a much better chance of keeping your relationship healthy despite the challenges fibromyalgia can present.
A Women Guide for Helping Your Spouse Understand your pain
Helping your spouse understand your needs will go a long way to making your life less stressful. Having been sick for the last two years I felt like I shouldn’t constantly tell him how I really feel, that he didn’t need to be burdened with it. It’s bad enough that he suffers because he has to do extra around the house and because we aren’t able to do the things we’d like to. Why should he also have to constantly hear just how bad I feel?
This misconception was corrected for me at my first support group meeting (last month). The theme of that particular evening was “caregivers” and by the end of the night I was in tears at realizing how wrong I’d been in the way I’d treated the person who loved me enough to take care of me.
How can I possibly expect him to understand what I’m dealing with if I don’t tell him?
Unless I’m lying in bed curled up in a ball he has no idea how bad I feel. Fatigue isn’t visible and neither is pain. As one husband put it, “you don’t have a pain meter on your forehead”. Sometimes I wish I did, it would be easier than constantly hearing “How are you feeling today?”. The worst part about that question is how we as a society have taken away its meaning. We figure no one really wants to know how we feel so we have the standard answers “fine”, “ok” and the truth is that for most people the question is a formality and they don’t really care. I realized how stupid that question was when the nurse at the Drs office asked it of me as they lead me to an examination room and I answered “ok”. Then I thought about it “If I was ok I wouldn’t be here!”. And as for our spouses, how we expect them to know that we aren’t ok if we are constantly telling them we are?
The study suggests there is a strong link between fibromyalgia, feelings of depression and fatigue. Proulx found that people with fibromyalgia were almost three times more depressed than their spouses and reported more anger and problems in the marriage, indicating that they were more likely to consider divorce than their spouses. The healthy spouses reported that it was difficult to watch their spouses experience pain.
3 Tips for Helping Your Spouse Understand
Be Honest with your partner (or caregiver) about how you really feel. If you are in pain, shout it to the rooftops. If you are feeling fatigued and literally don’t feel you could lift a finger, let them know. Let them know what they need to do for you and what you want them to do for you. It sucks always asking for help but it’s a necessary evil and if you have someone willing to help take care of you, you are very lucky.
They have to be able to believe that how you say you feel is how you really feel. So it’s important to always be honest. Don’t hide it some of the time and say you are OK when you aren’t, or allow yourself to fall into the pits of depression so that you end up asking them for more than you really need. Either of these will only lead them to wondering if you really do feel the way you say you do.
Make sure you really are doing all that you can do for yourself. I don’t mean just when it comes to getting your own drink or cleaning the house. I mean doing everything you can to make yourself better. Whether it’s Fibro or something else there are so many treatment options out there and so many things you can do for yourself to make yourself feel better. If your partner sees that you are out there examining ways to feel better, getting therapies, following drs orders, etc then it’s easier to believe that you aren’t just giving in to your diagnosis and to the pain.
A wonderful partner is the best tool we can have going into any illness or bad situation. Make sure they are there for you as a partner and just being forced to be along for the ride.
Tips for the Caregiver
Caring for someone with CFS or FM can be a stressful experience. You may take on extra responsibilities, experience financial strain, feel frustrated and resentful at times, lose companionship, face uncertainty about the future, and experience both reduced socializing and sexual difficulties.
Even with all the challenges brought by serious illness, there are many ways to take care of yourself. Here are nine to consider.
1. Maintain Your Health. This is the number 1 recommendation of experts on caregiving. To serve your loved one well and to avoid resentment and burnout, take time to get adequate rest, to eat well and to exercise.
2. Accept Help. When people offer to help, accept the offer and suggest specific things that they can do. If your finances allow, consider paying for help in such areas as meals, housecleaning and transportation.
3. Take Time for Yourself. Get a respite from caregiving by spending time away from the person who is ill, for example by pursuing a hobby. Give yourself an opportunity for leisure and enjoyment, a way to recharge your batteries.
4. Educate Yourself. Seek information about CFS or FM, especially strategies for reducing symptoms and improving quality of life. One source is the articles on our website. See the article “Educate Yourself” for a list of patient organizations, other websites and books about the two conditions.
5. Stay Connected. Avoid isolation and reduce stress by maintaining relationships with extended family and friends. This may mean getting together regularly for exercise or outings with friends, spending time with children or any other kind of socializing that keeps you connected with others.
6. Consider Counseling. Be sensitive to signs of stress and consider seeing a counselor if you detect them. Signs that counseling might be appropriate include feeling exhausted, depressed or burned out, or over-reacting, such as by angry outbursts.
Counseling can be helpful for gaining perspective on your situation or to explore communication problems. You might get help in individual sessions or in joint sessions with the person who is ill.
7. Grieve Your Losses. Just as people with CFS and FM experience many losses, so do those around them. They are deprived of part of the companionship the patient used to provide, as well as her work around the house and, in many cases, financial contribution.
And, just as the person who is ill has lost the future she hoped for, so do you have to adjust your dreams for the future. Like the person in your life with CFS and FM, you, too, need to grieve your losses. For ideas on how to work through loss, see the discussion of finding a “new normal” in the previous chapter and also Chapter 26.
8. Create New Shared Activities. Serious illness may make it impossible for you to spend time with the person who is ill in the same way as before, but you can develop new shared activities to do together.
One couple told us they took up the study of music using courses on DVD. The husband in another couple said that once he realized his wife’s new limits, they shifted from camping and hiking to dinner and a movie.
The point is to create occasions for shared pleasure, so that the relationship is strengthened and both ill and healthy members of the family don’t come to see their relationships as just about illness and deprivation.
9. Seek Support from Other Caregivers. Fellow caregivers can offer strength, support, inspiration and models of successful adaptation. You might meet such people through patient support groups.
For discussion and Q/As Join the support group “Living with fibromyalgia and chronic illness”