DISEASE MANAGEMENT: 10 ways to explain your illness to others

Courtesy Creative Commons, used with permission from Sofya Yaruya

We all feel like this, right? You can see it in her face – the frustration about feeling sick, the anger that no one believes her, the disappointment because people don’t understand. And healthy people can’t. They simply cannot even begin to fathom what life is like with a chronic illness. But maybe hearing some of the things on the list below will help.

  1. Imagine having the flu, and it never going away. Ever. The aches, the pains, the fatigue…and that’s on a good day.
  2. Now run a 10k and cut your grass with a pair of scissors. You’re approaching the level of fatigue we live with. And we have to repeat these two steps every day, because we don’t look sick.
  3. Pain floats through your body like a poltergeist. You can’t stop it, you can only try to hide the fact various parts of you are feeling like you’ve been stabbed. You can’t cry, because you’d cry all the time.
  4. Oh, and you can’t sleep. Well, not when you want to, anyway, but you could very well drop at a work meeting while you’re completely powerless to stop it.
  5. Your joints ache, but when you try to relax, restless legs flare up. You need to move to relieve them, so you get up to stretch, then nearly fall asleep right on the floor. That would be acceptable – at least you’re sleeping – but then you realize the stretches haven’t helped. You’re caught in sleep purgatory, just like every other night.
  6. Even showering and getting ready in the morning leaves you exhausted. Now you look presentable but dread having to go anywhere.
  7. Eating and digestion is, well, a challenge. You might have IBS symptoms, you might not be able to tolerate certain foods so you have to watch your diet, and you gain weight that you can’t lose no matter what you do.
  8. As all of this is happening to you, you know there are no good drugs out there to ease your symptoms. Some chronic illnesses have more effective drugs and some have less, but none of these illnesses are curable. That’s why they’re called chronic illness. No, we won’t “feel better”.
  9. You feel like an idiot talking to other people because your brain is so foggy. You lose words, ideas, sentences. Just today I was playing a game on my phone. I had an idea that I remembered I needed to look up. By the time I closed the game I had forgotten what that idea was. The same thing happened twice more today.
  10. Stress doesn’t just “stress you out” – it can cause truly debilitating pain that’s called a flare. A flare can last anywhere from a few hours to a couple of weeks. I had a busy week last week with my daughter’s school year ending and a volunteer job I do once a year that’s very close to my heart. I’m still having additional trouble sleeping and fatigue even more easily than “normal”.
  11. And a bonus – your symptoms constantly change, so you can’t predict a darned thing about how your day will progress.

Now that I’ve depressed you (or made you feel like someone actually knows what you’re going through) go forth and share!