What does it mean to live with illness? The Spoon Theory

Not everyone who deals with a chronic illness looks terribly ill

I know this website isn’t a resource for chronic illness, but having met so many people over the years who have been denied life and health insurance due to a chronic illness I decided to write this article. Not everyone who is dealing with illness looks sick – not from the outside.

After looking around the internet for information on living with a chronic illness I came across this amazing website, But You Don’t Look Sick. The website owner, Christine Miserandino, is a speaker, journalist, blogger and patient advocate in New York, NY. She also lives with Lupus.

In my work I talk to people everyday about their health. The reality is I, like all healthy people, can’t begin to relate to a person who lives each day with a chronic illness. Each day is spent planning every activity around medication, energy levels, contingency plans. Imagine living your life always being prepared for the worst case scenario – that day things go terribly wrong and you need to be rushed to the hospital.

I’m not going to make this short article about the need to buy insurance. Unfortunately, once a person is diagnosed with a chronic illness they can no longer by life or health insurance. But, besides financial planning I wanted to share this wonderful video of Christine Miserandino explaining “The Spoon Theory”. The video below is Christine’s Spoon Theory, written and spoken by her at the 2010 Annual NC Lupus Summit.

If you have someone in your life suffering from a chronic illness, or it has happened to you, The Spoon Theory is a beautiful and simple way to explain life with a chronic illness. Not everyone who lives life with a limited number of spoons each day looks like they have to make choices and sacrafices everyday. But if we can all understand that they are micro-managing their lives on a daily basis to make sure they don’t run out of spoons, or god forbid – waste a spoon, we can begin to understand what it must be like.

I encourage you to take the 13 minutes to watch this video – it’s fun and engaging. well worth your time.

The Spoon Theory written and spoken by Christine Miserandino

Related posts:

1. Temporary Insurance Agreement (TIA) When Applying for Insurance