I read the whole thing and can’t figure it out either. Maybe there isn’t supposed to be a point. Just stream-of-consciousness words on a blog. Performance art?
When the first thing someone tells me upon meeting me is that they have a medical condition, I think “uh oh, heeeere we go.” First of all, it’s none of my business. Second, why do you want me to know this? What am I supposed to do with that information? Is this what we are going to be talking about? And if not, why the need to share this fact? Such a confusing way to start out a conversation or blog.
It’s like saying, “First of all, I really like pancakes. Now here’s my post about programming in Python.”
Unfortunately, for people who suffer from a chronic illness, they have to deal with people like you. You might propose something that seems simple and normal to you, like, let's go here for lunch. They have to explain they can't because they have a very real medical condition, then they have to put up with people not believing them, thinking they're blowing it out of proportion, or just not wanting to make accommodations for them. It can be very degrading and isolating to live like this.
One way to minimize the amount of BS like that that you put up with is by just stating up front, "I have this condition." If the other person listens and responds positively, then you can probably find common ground. If instead they think, "Uh oh, heeeeere we go," you know to dismiss them.
Ok, but since it's a very real medical condition, why not lead with "I have Atypical Cystic Fibrosis, so I can't do X", instead of being all mysterious about it?
You can't really blame humans for being curious when you stoke but deliberately choose not to satisfy their curiosity.
I mean, HN specifically wants you to post "anything that gratifies one's intellectual curiosity". I don't know about others, but my intellectual curiosity certainly isn't gratified when someone leads with "I have a condition" but then gets all squirrelly about what it is.
If you tell people what your condition is and they don't take it seriously, that's their problem. If you don't tell what it is, it might be "a mild fear of puppets" for all I know. Unfortunately there are people that make up medical conditions for themselves, so you can't really expect everyone to just automatically accept "I have this condition" as an excuse for any behavior. For example, I've taught a number of students that made up conditions for themselves right at the moment their homework was due.
Often when you have a medical condition that is not well understood by most people you cannot do x, y or z. It might be exhausting to explain your limitations which may change day to day depending on how you're doing at that particular moment on that particular day. People may not believe you, and it feels awful to have to be around someone who won't take you seriously or gets angry with you if you try their supposed "cure" and it doesn't work. An ex-boyfriend of mine suggested a micro dose of acid would treat my migraines. I tried it and it made my symptoms worse. He got terribly angry with me for not trying hard enough because I didn't want to do acid for the fourth day in a row.
If I tell people I get migraines pretty much all of the time they think I get bad headaches, not that I can't see, lose my ability to talk, have my arm go numb and instead it feels like my jaw is stuck in a vise, I can't look at sunlight and every noise is painful. People don't want to hear about the ways someone they know is silently suffering.
That's fair, but do you really think your (apparently shitty) ex-boyfriend would've behaved better if, instead of telling him you suffer from highly debilitating migraines, you always said something like "no, we're not going out for dinner tonight because I have a condition", failing to ever explain what that was?
Again, if you are open about the condition, and someone responds to that knowledge poorly, that is their problem. Ignore those people. But if you keep the nature of the condition under wraps, that might make it "easier" to deal with in the short term at the cost of others being able to move forward with you at all.
In this case yes, if he didn't know I was diagnosed with migraines he would not have randomly suggested acid. He had an "evidence based" reason for thinking acid would help. I let people I'm close with know my symptoms. You can't always ignore people who you depend on.
When the first thing someone tells me upon meeting me is that they have a medical condition, I think “uh oh, heeeere we go.” First of all, it’s none of my business. Second, why do you want me to know this? What am I supposed to do with that information? Is this what we are going to be talking about? And if not, why the need to share this fact? Such a confusing way to start out a conversation or blog.
It’s like saying, “First of all, I really like pancakes. Now here’s my post about programming in Python.”