There is a great article in the New York Times titled “Chronic Pain: A Burden Often Shared“. The article talks about how chronic pain not only affects the sufferer but also their spouse, children and other loved ones around them.
Those of us living with chronic pain can relate to the frustration, sense of loss, depression, anxiety and stress it causes. We also feel guilty because someone else in the household has to pick up the slack for what we are not able to do. The person who has to pick up the extra slack can feel resentful, angry, frustrated and fatigued because they have to do it all, or they feel as though they are doing it all.
Dennis C. Turk, a pain management researcher at the University of Washington in Seattle, says:
Family members are rarely considered by doctors who treat pain yet a study we did found that family members were up to four times more depressed than the patients.
Pain experts agree that there are ways to improve the situation:
1. Recognize that chronic pain is not an individual problem. We get moody when we don’t feel good and are in pain. Talk to your loved ones and express that they should not take this personally. It’s the pain talking, not us.
2. You and your family learn as much as you can about your health condition and how to treat it. It may not be possible to completely get rid of the pain but there are probably many methods that can be used to reduce it.
3. Acknowledge your feelings. It is okay to feel whatever it is you feel and to state to others those feelings. If you are in chronic pain you probably feel guilty, feel lost and feel as though no one understands what you are going through. It can be lonely and there will be times where you want to talk, but just want someone to listen. Express those needs and state that you don’t expect anyone to fix it – you just need to vent.
4. Encourage patients to participate as fully as possible in family plans and activities, household chores, discussions and decisions. The worst thing you can do to someone who is ill is to make them feel even worse than they already do by not allowing them to do anything at all. There will be times when we can’t do anything, and we usually let you know. We need to still feel as normal as possible and to be involved. It is the one thing we have going for us that keeps us sane.
5. Communicate. Open, two-way communication is crucial to dealing effectively with chronic pain, said Dr. Turk, of the University of Washington. Family members need to know how they can be helpful and what might be hurtful. From the article:
Failure to communicate honestly and openly can become a cancer on a relationship, be it with a spouse, parent or child. If chronic pain has disrupted family plans, discuss a reordering of priorities. It may be possible to do more than you think.
You have a right to say that you are tired and need to rest, that you need a break from the routine lest you burn out, and that you need to maintain friendships and pursue enjoyable activities outside the home from time to time.
Likewise, the patient has a right and responsibility to express fear, disappointment, guilt and bad feelings about the behavior of some people, as well as gratitude for the help you and others provide.
6. Take care of yourself! This is the most important of all on the list. Delegate responsibilities to other family members and know that it is okay that you can’t do it all. Make sure you are eating regular meals, getting enough sleep (okay – for CFS & FM we know this is hard!), and regular exercise. Make sure you are seeing your physician for regular checkups.