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Living With Someone Who Has Fibromyalgia or Chronic Fatigue Syndrome

Bridging the Gap Between Your Old Life & Your New One

By

Updated July 02, 2014

Living with someone who has fibromyalgia (FMS) or chronic fatigue syndrome (CFS or ME/CFS) is a tough job, whether that person is completely disabled, 50% functional, or goes through occasional flares. In all likelihood, having a chronically ill person in your household will impact your life.

You can, however, take steps to make things easier for yourself. Do you feel guilty for even wanting that? You're not alone -- a lot of people in your situation feel like they should be worried about the sick person and not themselves. My husband has struggled with that, and we've both had to learn that it's OK for him to be frustrated with the situation. Your first step is to accept that living with someone who has fibromyalgia or chronic fatigue syndrome doesn't mean you forfeit your right to feelings of your own.

But let's be completely honest here: Those of us with FMS or ME/CFS can be difficult people to deal with at times. When you're feeling especially burdened by housework, financial matters, and caretaking, a sharp tongue or blank stare doesn't help matters at all. You may not be able to discuss your feelings with the sick person in your life as she might not be in a place to accept that your feelings are directed at the situation and not at her. It's a good idea to find support from other places to get you through this.

Feeling the Loss of "How Things Were"

Both you and your loved one will have to come to terms with changes in your life. FMS and ME/CFS are chronic conditions, which means your life is not likely to ever be what it was before. That's a tough thing to accept, and you'll each need to reach acceptance in your own way and in your own time.

Essentially, you need to grieve for what you've lost. The stages of grief are:

  1. Denial - A refusal to accept what is happening.
  2. Anger - Feeling like it's not fair or being angry in general.
  3. Bargaining - Promising something such as being a better person if the situation goes away.
  4. Depression - Giving up, not caring what happens.
  5. Acceptance - Coming to terms with the situation and being ready to move forward.

Where are you in the grief process? Identify it now, and look at what the next stages are likely to bring. If you feel like you've been stuck in one stage, find someone to talk to about it. If you feel like you need a professional counselor to help you, don't be ashamed of that and talk to your doctor. If you become clinically depressed or simply cannot accept your new situation, you won't be doing any good for yourself or for the sick person in your life.

Managing Your Expectations -- Three Steps

Part of accepting the situation is managing your expectations. For example, my husband and I used to go for bike rides, do some hiking, maybe take a canoe out on the river. He's had to change his expectations about how we will spend our time together. I also left my career and my income behind and hoped that I'd be able to find something I could do from home. That meant he had to change expectations about our financial future as well.

Step #1

The first step toward managing your expectations is to take an honest look at your situation and ask yourself, "What do I know about the circumstances?" Taking a little time to learn about and understand the condition will help you deal with the reality it creates.

What do you know about your loved ones illness? Do you really understand it? Here are resources that can help:

Step #2

Second, take a long-term look at things. Think, "If things stay just as they are now for a year or longer, how will that impact me, my family, and the person who is sick?" This can be an overwhelming question, when you consider financial, emotional, social and emotional issues. Approach them one at a time and try to stay logical.

Once you've identified what is likely to change, allow yourself to grieve for the things that have to fall by the wayside (at least for now) and let them go. Then focus on the areas where you foresee big problems and work toward realistic solutions.

Step #3

Don't feel like you're alone in finding solutions. Involve your sick loved one as much as possible, call on friends, family, doctors, clergy, social services, your insurance company and anyone else who may be able to help you find ways to get through this.

Moving On With Your Life

Once you've gone through the stages of grief and the steps outlined above for changing your expectations, you'll likely be better equipped to move forward with your life and to be supportive of the sick person in your life. On behalf of that person, I thank you for taking the time to care.

Sources:

1969 Elizabeth Kubler-Ross, On Death and Dying. All rights reserved.

1999 National Dysautonomia Research Foundation. All rights reserved. "Caregiver Discussion Presentation"

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