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Fall 2000

Living With CFIDS
Explaining an Invisible Illness

By Frankie Campling

Over the course of my illness, it has been vital for me to learn how to communicate the realities of chronic fatigue and immune dysfunction syndrome (CFIDS) to other people, but it has not been easy.

CFIDS is an invisible illness with few outward signs. In addition, most people only see me when I am well enough to get out or receive visitors. They judge me by the way I appear then, since they don’t see the times when I am feeling so ill that lying flat on my back is the best I can manage.

I have found that it is always worth checking out what a person does or doesn’t know about CFIDS and then filling in the gaps in their knowledge. I try not to assume that someone is being critical or callous when they aren’t being sympathetic—it may well be that they genuinely don’t realize what I am going through. I can’t expect them to understand if I haven’t told them.

Here are some suggestions for communicating about CFIDS with others that I have found really helpful.

• Stay calm. There is something about strong emotion that makes people discount much of what you say. Choose a time when you and the person you are communicating with are at your best.
  
  
• Keep it short and simple. I know this is hard, since CFIDS is a complex illness, but avoid long-winded explanations because it can make people lose interest.
  
  
• Tap into the other person’s experience. If, for instance, I am trying to describe the exhaustion of CFIDS, I find it helps if I remind the person of a time when they experienced something like it, such as a bad case of the flu. I can then point out the differences, such as “It doesn’t take much to get me that exhausted, and a ‘good night’s sleep’ probably won’t make me feel much better.”
  
  
• Be consistent. Even though your fluctuating health may be wreaking havoc with your moods, try not to send mixed messages. For example, do your best not to crossly reject help one day and then express frustration another day when help is not offered.
  
  
• Use written information. Who can remember all the statistics and medical references pertaining to CFIDS, especially if you are experiencing “brain fog?” It helps to keep a written list to refer to when you are discussing CFIDS. The CFIDS Association has a simple, two-page fact sheet that may be of help. To request a copy, call the Resource Line at 704/365-2343.
  

Build up a store of useful responses.  It helps to think ahead of time about your answers to some questions or comments; you might even want to write your favorites down. When someone says to me, “You are looking so well,” even though I am going through a relapse, I say “How nice of you to say that. It’s bad enough feeling awful without looking awful as well!”

Frankie Campling lives in Oxford, England and has had CFIDS for 10 years. She provides telephone support and counseling to fellow PWCs.