This is for husbands or wives or families of someone with fibromyalgia; those who must share the partner’s distress day in and day out. The illness impacts upon the partner, in different ways, as heavily as it does on the ailing person. You may be facing a long-term commitment, which echoes the wedding vow, “in sickness as in health”.
Caregiving, by partners or families, requires making compromises and changes in priorities. And it calls for involvement with the symptoms and limitations that are part of a chronic illness. Remember that you are not the one who has been diagnosed. You need to respect your partner’s wishes as to your degree of involvement. Your role is not that of a doctor or advisor, but just to be there to offer loving support.
One thing that fibromyalgia persons have in common is not knowing how they are going to feel from one day to the next. The symptoms wax and wane. There will be good days and bad. It becomes difficult to plan ahead at all, for fear of having to cancel plans when the time comes. But if you do have to cancel, perhaps you can reschedule. If you plan a holiday trip, allow for plenty of breaks and resting spots. If you have a special event or outing, allow plenty of time for your partner to rest beforehand.
IT’S GOOD TO TALK
Talking with each other is vitally important. Knowing what your partner is feeling or thinking enables you to act in both your best interests. Try to keep the lines of communication open at all times. Even though the boundaries may have been changed by the illness, the rules of love and respect are still the same.
Try to keep your life as normal as possible. Try to maintain those things you’ve always enjoyed doing together. If your partner is unable to take those walks as before, walk a little slower or for a shorter distance. Find the activities you find mutually satisfying. Explore new horizons – take a class or join a club together, try short outings that are within physical capabilities. Maintain your circle of friends. Listen to your partner’s suggestions.
There is always the danger of caregiver “burnout”, so listen to your own feelings. Do you find yourself feeling tired and frustrated? Do you find yourself getting angry or irritated when your partner requires you to do something? Are you starting to feel overwhelmed with your day-after-day caregiving? These are signals that you may be caring for yourself less than you are caring for your partner.
You may be sacrificing yourself because you feel guilt that you are healthy while your partner is in pain. Your partner can’t read your mind, so explain how you feel. Tell your partner if you need a break. Ask yourself how many of your own activities you have stopped doing in order to be a caregiver. It’s better if you find the time to get out and keep enjoying life, and bring that joy home to share with your partner.