Journal: comments that hurt as much as my symptoms

May I briefly step out of my professionalism, please and be brutally forthright? Just for 5 minutes (or shorter if you can read fast). There are certain flippant comments for which I’ll feign a smile but please know I’m dying a little inside.

1. When you say, “You don’t look sick/ you look fine to me.” I think, Of the two of us, one apparently thinks they have microscopic vision. How does that make ME the crazy one? I’ll be sure to consult with you the next time I need a free amateur diagnosis.

2. When you say, “I thought you said you had another/ different condition.” I think, I do. It is possible to have multiple overlapping ailments.

3. When you say, “I’m sure it’s not as bad as you’re making it sound.” I think, You’re right; it’s actually worse. I pretend to be fine so I don’t burden people any more than I have to.

4. When you say, “Are you sure you’re not just imagining things?” I think, Are you sure you’re not just being insensitive? Because if I was going to fake an illness I’d choose one everybody already believes is real.

5. When you say, “But you were fine yesterday.” I think, I was. What’s your point?

6. When you say, “That sounds unlikely.” I think, Off the top of your head I’m sure it does. But it wouldn’t if you had conducted countless hours of research, as I have.

7. When you say, “You know what you should do?” I think, Yes: walk away now because you’re about to make a flippant suggestion regardless of whether you know the details of my situation.

8. When you say, “Sometimes you just have to push yourself.” I think, I do every day. If my effort seems substandard now, just imagine what it’s like when my symptoms flare up!

I don’t doubt the vast majority of people mean well. But is trying to find a quick fix for your sake or mine? You hate feeling helpless; I hate feeling like a burden. I didn’t ask for this but here it is. So let’s agree that if you ask what I need I’ll simply thank you for your concern and request continued respect and support. Deal?

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