Living With Someone Who Has Fibromyalgia or ME/CFS

Living with someone who has fibromyalgia (FMS) or chronic fatigue syndrome (ME/CFS) can be tough, 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. If 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: While it’s not their fault symptoms can make them unpleasant, people with FMS or ME/CFS can be difficult to deal with at times. When you’re feeling especially burdened by housework, financial matters, and caretaking, a short temper 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 they might not be in a place to accept that your feelings are directed at the situation and not at them. 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 may not 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.

Think about where you are in the grief process, then 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 healthcare provider. 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, 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. Learn about a simple explanation of fibromyalgia and how to understand chronic fatigue syndrome.

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 and let them go. Then focus on the areas where you foresee big problems and work toward realistic solutions. This will make you feel more in control.

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, healthcare providers, 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.