National Invisible Chronic Illness Awareness Week

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Today is the first day of National Invisible Chronic Illness Awareness Week, which runs from September 13 through September 19, 2010. If you do not suffer from one of these diseases, you probably know someone who does. You may have seen someone who looks healthy park in a handicapped spot, and wondered why. You may have a coworker who looks fine but misses a lot of work due to illness. Invisible illnesses are all around you, and people who suffer from them are often judged harshly because of them.

Fibromyalgia, chronic fatigue syndrome, multiple sclerosis, rheumatoid arthritis, cancer, pulmonary hypertension, back pain syndromes, and vision or hearing loss; these are just a few illnesses that can be found in people who look young and healthy. Those who are not privy to their diagnosis may think these people are lazy or malingering. It is hard to have a chronic illness, and it is made more difficult sometimes when you look healthy. Family and friends may not understand why you can’t do things with them all the time. They may say, "But you look fine!"

Pain is invisible. So are many neurological symptoms. They can be subtle. You may look like a supermodel but not be able to walk across a parking lot due to a breathing problem, weakness, or pain. It is embarrassing to be unable to keep up with people your own age. Suddenly your world becomes smaller, and it can feel very isolating.

People who have never been ill sometimes suffer from what I call the arrogance of the healthy. That just means if you have never been really sick, you may not be able to understand what it is like. You may judge someone because you don’t quite understand why they must say no to activities, or must nap or take pills or be too fatigued to talk on the telephone.

Lisa Copen founded Invisible Illness Awareness Week to encourage people with invisible illnesses to share their struggles with each other in order to ease their isolation. She has a campaign called, “Each One Can Reach One” to encourage those with invisible illnesses to keep hope and share their struggles. She has a website at http://invisibleillnessweek.com.

Another great resource for those who have invisible illnesses or know someone who does is ButYouDontLookSick.com (http://www.butyoudontlooksick.com). Christine Miserandino wrote an essay called The Spoon Theory to explain to people who don’t understand chronic fatigue and pain why those of us who suffer from these things often can’t do everything our family and friends want us to do. The Spoon Theory was extremely helpful to me when I was diagnosed with rheumatoid arthritis and had to quit jobs and seriously curtail my normal activities.

Please take time this week to try and understand and encourage someone you know who has an invisible illness. If you are a sufferer, please know you are not alone.

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Cary Cook BSN RN View Profile Send Message

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