Guide to what not to say to very ill people

General Don’ts:

• Don’t tell me about how your situation is so much better or even worse. I had a roommate that at the first of the year I mentioned, “Oh I have Marfan’s Syndrome.” Her initial response was, “Oh the doctors thought I had that,” and she proceeded to tell every one in the room everything she thought she knew about it. She was actually wrong on half her facts but more so she took my trial in life and broke it across the floor like it was nothing. Like my struggle was nothing, because well, the doctors thought she had Marfan’s and look at her now, isn’t she lovely? She beat it and you can too! …I wanted to set her on fire. On the flip side I told one person about my disease only to have them outline EVERY SINGLE THING THAT HAS EVERY HAPPENED TO THEM. Same thing, You’ve just diminished what I am going through to nothing because what you are going through is so much worse. …does anyone have a lighter?
• Don’t give me that face of sympathy and tell me “Sorry.” Sympathy has got to be the worst thing that I’ve ever experienced. I know you’re trying to relate to me but it only does one of two things. 1. Makes you look fake. Or 2. spirals me down into, “I’m sick, I’m worthless, I’m less then you.” Sympathy is looking down from your soap box and commenting how small I look from up there, and then commenting, “don’t worry, I pity you for it.”
• Don’t act like it’s the end of the world. “Oh, you poor soul!” “Oh that must be terrible!” “How do you live with this?” My response usually wants to be along the lines of, “Same way you deal with being stupid, one day at a time!” This is a soap box response again. Offer me kindness and empathy, not some overly dramatic display about how much you supposedly care.
• Don’t treat me like I’m simple. I was born with a genetic deseas that makes it hard for me to go up stairs, not a small IQ. I know what’s wrong with me. I don’t need you acting like I’m infintile to add to the mess.
• Don’t Get Mad at my Situation. Because honestly the first thing I see is that you’re getting mad at me, and there is nothing you or me can do about my genetic code, so you’re mad and I’m sad all over nothing. This is something that will happen at some point after you have learned of someone’s struggle. There will be something, there will be a time, when their disease, their affliction, interrupts your life, when it doesn’t allow for something you want from them or want them to do. Even if it’s just the fact that everything they have to deal with is constant, and it’s wearing on the both of you. For someone like me, it will be until I die. And that’s a long time, and it’s hard to be patient with it. But do. Because speaking from experience, th…

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