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Tips for Dealing with People with CFIDS

Posted Apr 04 2009 12:16am
This is from the CFIDS Assocation of America's website:


How to Help: General Suggestions

The keys to helping a person with CFIDS are education, communication and emotional support. If you don't know how to be supportive, ask the PWC for suggestions.

Educate yourself about 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 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 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.



Suggestions for Friends:

Friendships may become strained, may be strengthened, or may dissolve in the face of chronic illness. The give-and-take in a friendship becomes unbalanced when one person is ill. Many ill people become reclusive and distant, especially during relapses, as spending time with people requires energy. Since energy is in short supply, your contact may be less frequent than in the past.

Recognize that although the person may seem "normal" when you're together, you may not see the relapse which follows activity. Many people with CFIDS want to function at their best when with their friends, but privately pay a price later.

Your friendship is needed now more than ever. Show that you care.

Discuss feelings of rejection and try to work through misunderstandings. Ask questions about things you don't understand. Discuss options and set ground rules for continuing the friendship: Will there be less contact? Who will call whom? Will it be clear when he or she needs to end a visit or conversation?

If you have doubts about your ability to continue your friendship, examine the reasons for this: Fear of contagion? Anger about postponed plans? Tired of hearing about complaints and symptoms? You may be able to solve these problems together and continue the friendship with mutually agreed-upon changes.

If you are unable to continue your relationship, express this in a straightforward, yet caring manner, rather than simply disappearing. Let the person know that he or she is not the problem; the illness is.
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