What’s It Like Living with an Undiagnosed illness?

Sometimes people ask me what it’s like living with a chronic, undiagnosed illness. I often have trouble explaining it, like a woman trying to describe to a man what childbirth is like. Or in all fairness, a man explaining to a woman what it feels like to get kicked in the testicles.

So, I’ve created a simple exercise to help you healthy, vibrant souls understand what it feels like living with a chronic illness: a world of ongoing ambiguity, pain, and fatigue. Sounds fun, right?

Try This Simple Exercise

  1. Close your eyes. Wait. Never mind. Keep your eyes open so you can read.
  2. Imagine the worst flu you ever had.
  3. Now imagine sometime when you sprained your ankle, or broke a bone, or something that made it hard for you to walk.
  4. Now imagine not sleeping well for six months.
  5. Imagine how it feels when you have something on the tip of your tongue, but you can't remember it.
  6. Imagine feeling off balance like you are on a small boat in the middle of a storm.
  7. Imagine having the most severe headache you've ever had.
  8. Imagine running a marathon and the severe muscle pain and weakness that comes with it.
  9. Imagine your heart racing, 195 beats per minute (trust me, it's really fast!), and you feel like you are being chased by a tiger, but you are sitting completely still.
  10. Imagine the worst bout of depression and loneliness you have ever felt.
  11. Imagine the fear of not being able to trust your body because at any moment you could lose control and debilitating symptoms can take you hostage.
  12. Now imagine all of those together.
  13. Then imagine trying to live your life.

You can open your eyes now.

I know, it’s heavy. But I wanted to show you just how daunting it can be. And I do have good news! There are many simple things you can do to support someone with a chronic illness. Listen. Empathize. Give them a hug. Smile. Make them laugh. Share your feelings. Share your time. Believe them.

And for those of you in the same proverbial boat as me, share this with your friends and family and get the conversation started. The more open we are, the more we share, and the more we relate with one another, the less daunting this will be, for everyone!

Wishing you healing and happiness,


P.S. Come to think of it, I've never given birth to a child or been kicked in the testicles. However, I do know pain. It's all in my memoir, A Few Minor Adjustments. Would love to hear what you think about it! :)