What is it like to have a Mystery Disease?

By Maureen DeGarmo

Imagine for a moment that you have the flu, you feel exhausted and achy, and it seems like your symptoms will never end. What if that were true? What if your symptoms didn’t end? This is what it feels like to have a chronic disease.

Now imagine you don’t know what disease you have, and that everyone around you – from doctors to friends and family – doesn’t know how to react because there is no real way to explain your illness. Some people may even doubt that you are really sick. This is what having a mystery disease is like.

Here are some examples of the difference between a diagnosed illness and a disease that has no name:

Chart comparing people's reactions

A mystery disease is not necessarily any less severe or difficult to manage that a diagnosed illness. Explaining your situation is difficult, because you have no terminology to use and no community of fellow disease sufferers and supporters to consult.

But even if you have a mystery disease, you can still learn to express yourself to make things clear to those close to you. Some tips:

  • Choose phrases in advance so you know what to say.
  • Keep phrases short, to the point, specific, and calm.
  • Gauge your friends’ reactions so you know who is sympathetic and who is not.
  • Elaborate only if you feel understood.

A few months ago I brought my cane to a family gathering at a restaurant. One cousin asked me about it, so I explained my chronic dizziness and told her it helps me when I am in a crowded place. She said, “Oh! It says, ‘don’t expect me to move quickly.’” I instantly knew that she understood and accepted my situation.

If you have a loved one with a mystery disease, try imagining yourself with a permanent flu that has no treatment. If you have a mystery disease, then my hope for you is that one day you will receive the gift of a diagnosis. Meanwhile, you can draw strength from those who are not sick, and compassion from those who are.

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