With all its pitfalls and complexities, deciding how to communicate with others about CFS/FM can be a very thorny issue. We must choose whom to tell and how much to tell; and potentially we must make these decisions on a daily basis, with everyone we meet. Particularly with newer friends and acquaintances, it can be difficult to know when to reveal we have a chronic illness and how much detail to share.
It is often frightening to make ourselves vulnerable by disclosing our illness. We may be afraid of being rejected or of not being believed. At times we may not want to be treated differently due to our illness, or we don’t want our condition to become the focus of the conversation. Perhaps we fear that someone isn’t truly interested in hearing about our symptoms or our struggles, or that our friends will grow tired of listening. I often dread questions about how I’m feeling from people I haven’t talked with in a long time. I imagine they’re thinking, “I can’t believe you’re still sick.”
You may be able to get a sense of how someone will react by sharing something small at first. The response you receive may help tell you how a friend might deal with more extensive details of your illness. The challenge is to find a balance between revealing too little and sharing too much. In The Fibromyalgia Relief Book, Miryam Williamson points out, “As hungry as you may be for support, it’s enormously important to protect those around you from being overwhelmed by your need to talk about what’s happening to you…Even the most compassionate and loving person can reach a point of boredom and fatigue if all he or she ever hears from you is about fibromyalgia.”
The circumstances of every situation and each relationship are different. Only you can decide what you want to share and how and when to reveal it. No matter what the response, do your best not to take it personally, as difficult as that may be. Says Carol Sveilich, author of the book, Just Fine: Unmasking Concealed Chronic Illness and Pain, “It’s important to pick your own battles and believe in yourself and your reality. Don’t worry about convincing those who are fearful or can’t be convinced. It’s a waste of time and energy.”
It is valuable to remember that—with or without chronic illness—people will disappoint us at times, just as we will disappoint others. Realize that feelings of frustration, confusion, and sadness are natural. It is important to acknowledge the sense of pain and loss that is a part of learning to live with illness.
However, there are things we can do to take care of ourselves and enhance the quality of our relationships, despite illness.