Living With Someone Who Has Fibromyalgia or ME/CFS

Bridging the Gap Between Your Old Life & Your New One

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Living with someone who has fibromyalgia (FMS) or chronic fatigue syndrome (ME/CFS) can be tough, whether that person is completely disabled, 50 percent 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. Your first step is to accept that living with someone who has a debilitating illness doesn't mean you forfeit your right to feelings of your own.

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 anyone around you.

Managing Your Expectations: Three Steps

Part of accepting the situation is managing your expectations. For example, say you used to go for bike rides, do some hiking, maybe take a canoe out on the river. You'll have to change your expectations about how you will spend your leisure time together. If the sick person has to leave their job, as well, it could mean shifting expectations about your 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 one's 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, and social 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 know of resources or be able to help you find ways to get through this.

A Word From Verywell

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 you care about. On behalf of that person, thank you for taking the time to care.

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Article Sources
  • 1969 Elizabeth Kubler-Ross, On Death and Dying. All rights reserved.
  • 1999 National Dysautonomia Research Foundation. All rights reserved. "Caregiver Discussion Presentation"