How do you explain fatigue to other people?

I have written about cancer fatigue before. Fatigue can affect people with any type of cancer and at any stage of treatment, having said that there is actually very little research and practical support available. Fatigue is tiredness that doesn’t go away with rest and it can be very hard to explain this to other people. If you are looking for more information on fatigue, a good place to start is some of my earlier posts:

• Cancer Fatigue – Why am I so tired? « Understanding Cancer
  • Online resources and diaries including links to scientific research
• Controlling Cancer Symptoms (including pain and fatigue) « Understanding Cancer
  • Online diaries and things you can do to help yourself manage fatigue
• Does exercise help ease fatigue in people with cancer? « Understanding Cancer
  • An overview of a research study that showed exercise can help relieve cancer fatigue
• Fatigue, cancer and “coping” « Understanding Cancer
  • How your thoughts and feelings can influences fatigue and links to support groups and courses

This information is all very well, but how do you explain fatigue to someone who has never had it?  Many people think that if you “have a long lie” or “get an early night” you will cure fatigue. Other people think that if you “have a break” or give up some of your normal activities you will recover from your fatigue.  In many cases this is simply not true. Doing too much certainly makes fatigue worse, but resting doesn’t necessarily make it better.  Sometimes, you will come across the view that if your fatigue isn’t lifting then you must be depressed.  Certainly depression can cause fatigue and treatment for depression can ease fatigue, but this is not the whole story. Explaining this to your close friends, family and GP can be very difficult.

So the problem remains, how do you explain fatigue to others? The very best resource I’ve found is called the Spoon Theory.  If you only click on one link in this post this is the one to click, you’ll find it on the website http://www.butyoudontlooksick.com (there is also a pdf version if you want to print it). The website has gone a bit over the top with marketing (you can buy posters, key rings, spoons, as well as a range of “cancer sucks” merchandise etc).  But the basic information and the idea is good and I recommend you read it.

Do you know of any other resources that help explain fatigue to others?  If so please leave a comment below. Thanks.