Invisible Illness Part 1: You look good…you must be better, right?

Uh…no. This is a common problem with many people facing chronic illnesses: the so-called “invisible illnesses” that ravage our insides, but may cause only minimal visible damage outside. I know in my case, when I look the healthiest (nice rosy cheeks, good color), it actually means that I am not doing so well and my temperature regulation is on the fritz and I better sit or lay down fast before I fall over.

Invisible illnesses are many these days and can include anything from severe arthritis to fibromyalgia and chronic fatigue to lupus. In some ways, these illnesses are all the worse for the fact that people can’t tell that you are sick by looking at you and therefore may make judgments about how much you should be doing, even if you cannot.

One of the most difficult things that chronically ill people have to deal with is actually the way they are treated by others rather than their daily symptoms. Although ultimately it is the illness that is causing the destruction in their lives, it can be devastating to hear callous or insensitive remarks from people who are often well-meaning but speak before they think. Sometimes even things that sound completely innocuous can be painful for us to hear, even though they might not seem like it.

Some examples of helpful and hurtful remarks are given by the Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) Association of America at cfids.org:

CFIDS Family & Friends:

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 [people with chronic illness]. 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.

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The next installment of the invisible illness series will talk about what not to say to a person with chronic illness.