Living with someone who hasfibromyalgia(FMS) orchronic 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.
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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.
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 way and in your own time.
Essentially, you need to grieve for what you’ve lost. The stages of grief are:
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 asimple explanation of fibromyalgiaand how tounderstand 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.
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.
2 SourcesVerywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.Lyons KS, Jones KD, Bennett RM, Hiatt SO, Sayer AG.Couple perceptions of fibromyalgia symptoms: the role of communication.Pain. 2013;154(11):2417-26. doi:10.1016/j.pain.2013.07.018Harvard Health.5 stages of grief.
2 Sources
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.Lyons KS, Jones KD, Bennett RM, Hiatt SO, Sayer AG.Couple perceptions of fibromyalgia symptoms: the role of communication.Pain. 2013;154(11):2417-26. doi:10.1016/j.pain.2013.07.018Harvard Health.5 stages of grief.
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
Lyons KS, Jones KD, Bennett RM, Hiatt SO, Sayer AG.Couple perceptions of fibromyalgia symptoms: the role of communication.Pain. 2013;154(11):2417-26. doi:10.1016/j.pain.2013.07.018Harvard Health.5 stages of grief.
Lyons KS, Jones KD, Bennett RM, Hiatt SO, Sayer AG.Couple perceptions of fibromyalgia symptoms: the role of communication.Pain. 2013;154(11):2417-26. doi:10.1016/j.pain.2013.07.018
Harvard Health.5 stages of grief.
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