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When a Loved One Suffers from Chronic Fatigue Syndrome or Fibromyalgia

Posted on February 19, 2016 by Disability Help Group

If chronic fatigue syndrome or fibromyalgia has stricken your spouse or partner, your child, your sibling, or a good friend, you may find yourself feeling confused and helpless. It’s difficult to see a loved one in so much pain, but what can you say or do to make them feel better? Perhaps you’ve tried to be supportive and find that your loved one reacts in frustration. Both of these illnesses can present new challenges to your relationship.

Here are some helpful tips from the Chronic Fatigue and Immune System Dysfunction Syndrome Association of America:  

  • Educate yourself about Chronic Fatigue Immune Dysfunction Syndrome (CFIDS). Stay informed by reading the CFIDS Chronicle, the CFIDS Association’s quarterly publication with articles about research, treatment and coping.
  • Validate and acknowledge the seriousness of the illness. Be as patient, caring and understanding as you can be.
  • Attend medical appointments with the person with CFIDS (PWC) to show support, take notes, offer your observations and verify reports if necessary.
  • Offer to help in specific ways, e.g., running errands, balancing checkbooks, managing finances, helping to fill out disability forms, tracking health insurance claims.
  • Enjoy activities together, modifying them as necessary, and talk about fun times you’ve enjoyed together. Keep plans and expectations flexible to accommodate unpredictable symptom changes.
  • Avoid comparing the way things used to be to today.
  • Create a “new normal,” modifying goals and plans as necessary.
  • Keep lines of communication open. Be willing to listen, but let the PWC know when you are overloaded and need a break. Don’t let CFIDS-related anger control your discussions. Sick people may overreact, lose track of conversations or have difficulty expressing their thoughts. Memory impairment may cause persons with CFIDS (PWCs) to interrupt (“If I don’t say it right now, I’ll forget it”). If the interruptions are frequent or distracting, suggest that they jot down notes during the conversation.
  • Avoid making well-intentioned comments that may be perceived as insensitive and hurtful, potentially damaging closeness and trust.  

Examples:

What do you expect me to do about it?
You’ll just have to live with it.
If you just _________, you’ll get better.
Pull yourself up by your bootstraps.
You can beat this thing if you really want to.
I have a lot of the same symptoms as you do. 
 

  • Healthy people do experience some CFIDS symptoms from time to time, although not as frequently or severely as PWCs. Statements such as, “I get tired, too,” and “You’re not the only one who’s forgetful” may cause persons with CFIDS to feel that they and their illness are not being taken seriously. Instead, try to word your comments constructively.  

Examples of helpful responses are:

I’m sorry you’re feeling so badly.
I wish I could make it better for you.
I know this is difficult for you.
You’re handling this illness so well, but I know it really gets you down sometimes.
What can I do to help? 
 

  • Be cautious about giving advice. The PWC needs empathy and validation but may reject well-intended but unwanted advice or attempts at “fixing.” Often he or she just wants you to listen.
  • Remember: This illness isn’t logical. Respect the need to prioritize, to rest, to discontinue any activity at the first hint of fatigue. The PWC may need to change plans at the last minute or refuse to do certain things which may produce fatigue or relapse.
  • Contribute to the battle to conquer CFIDS by making a tax-deductible donation in honor of your loved one.