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Living with an orphan disease

Before you continue reading this post, I must warn you--it is full of sarcasm. I apologize; I'm in a sassy mood today.

The good things about having an orphan disease:

1. If you tell someone about your disease, they often look at you like you're an alien. Hey, it's cool, I can be an alien.

2. If people have only heard about CF from their biology class, they think you're going to die any second, bringing on very entertaining bouts of freak-out moments.

3. You have a pretty good excuse to get out of physical activity, if you so choose to take it. ("I can't, my lungs will explode if I run).

4.  People question if you're actually sick because you don't look like their definition of "diseased"…. But really, this is actually a plus sometimes. I don't want people to see me and automatically associate me with sickness.

5. You have to explain your orphan disease in baby steps. People can't take in new information all at once. You must go at a slow, gradual pace. For every single relationship you're in. And with all the new people you meet.

6. You get to figure out the lovely balance of when you're going to start that gradual process of explaining that, oh by the way, your life is actually a lot different than other people probably picture it.

7. When you explain the concept of an orphan disease, some people literally think that means you're an orphan. (In case you didn't know, I'm not an orphan. I have two wonderful parents who both love me deeply. Orphan disease means that no one knows about it, and society as a whole focuses much less on it than on the "core" diseases of our world).

8. You get to pretend like you just need more sleep than most, are more introverted than most, eat more than most, or have worse seasonal allergies than most to cover up your necessity to take care of your body.

9.You meet some of the coolest members of your own orphan disease community, and you can learn a lot from people who understand what you're going through.

10. You meet some of the best "healthy" people in the world who are willing to learn more about your orphan disease and actually care immensely about how you're doing, physically, emotionally, and spiritually.

Oh living with an orphan disease…it's definitely an experience!


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