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Living With Someone Who Has Fibromyalgia/CFS


“Living With Someone Who Has Fibromyalgia or Chronic Fatigue Syndrome: Bridging the Gap Between Your Old Life & Your New One”

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:

Denial – A refusal to accept what is happening.
Anger – Feeling like it’s not fair or being angry in general.
Bargaining – Promising something such as being a better person if the situation goes away.
Depression – Giving up, not caring what happens.
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.

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.


Understanding Depression In A Friend or Family Member

  • Depression is a serious condition. Don’t underestimate the seriousness of depression. Depression drains a person’s energy, optimism, and motivation. Your depressed loved one can’t just “snap out of it” by sheer force of will.
  • The symptoms of depression aren’t personal. Depression makes it difficult for a person to connect on a deep emotional level with anyone, even the people he or she loves most. In addition, depressed people often say hurtful things and lash out in anger. Remember that this is the depression talking, not your loved one, so try not to take it personally.
  • Hiding the problem won’t make it go away. Don’t be an enabler. It doesn’t help anyone involved if you are making excuses, covering up the problem, or lying for a friend or family member who is depressed. In fact, this may keep the depressed person from seeking treatment.
  • You can’t “fix” someone else’s depression. Don’t try to rescue your loved one from depression. It’s not up to you to fix the problem, nor can you. You’re not to blame for your loved one’s depression or responsible for his or her happiness (or lack thereof). Ultimately, recovery is in the hands of the depressed person.


What you can say that helps:

  • You are not alone in this. I’m here for you.
  • You may not believe it now, but the way you’re feeling will change.
  • I may not be able to understand exactly how you feel, but I care about you and want to help.
  • When you want to give up, tell yourself you will hold on for just one more day, hour, minute — whatever you can manage.
  • You are important to me. Your life is important to me.
  • Tell me what I can do now to help you.

Avoid saying:

  • It’s all in your head.
  • We all go through times like this.
  • Look on the bright side.
  • You have so much to live for why do you want to die?
  • I can’t do anything about your situation.
  • Just snap out of it.
  • What’s wrong with you?
  • Shouldn’t you be better by now?

Adapted from: The Depression and Bipolar Support Alliance

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