Some folks are very open about their illnesses. others refuse to discuss it. i can understand both sides of this. at first, i talked openly about having lupus. but i had so many negative reactions, with folks basically blaming me for getting sick, or worrying it was contagious, or treating me differently, or thinking i was a hypochondriac. One friend even told me to “get over it” because i’d been talking about it for like a year. (well, I still had it, i was still trying to come to terms with it, and those feelings were no less intense one year after diagnosis than they were one week after diganosis.)
I've learned I can’t expect people to get it if they haven’t had to deal with a serious illness. Trying to explain having to budget your energy to someone who's never been ill is like trying to explain to a trust fun baby why you can't just take off work and go to Mexico whenever you like. So, I choose where and where and to whom i speak about this. oddly, i find i can be very open about it online and people don’t attack me online. Usually people are polite in real life and rude online where they can be anonymous, but in the case of illness, i find it to be quite the opposite, because people are frightened by their own mortality and vulnerability, and we are walking reminders of both.
So while i may have come to terms with having lupus, I realize the rest of the world has a long way to go in coming to terms with their own vulnerabilities. My not talking about lupus openly amongst "earth people" has nothing to do with my own acceptance of the illness, as much as not wanting to subject myself to the weird and sometimes cruel responses of others. Which is something I have accepted.
I've learned I can’t expect people to get it if they haven’t had to deal with a serious illness. Trying to explain having to budget your energy to someone who's never been ill is like trying to explain to a trust fun baby why you can't just take off work and go to Mexico whenever you like. So, I choose where and where and to whom i speak about this. oddly, i find i can be very open about it online and people don’t attack me online. Usually people are polite in real life and rude online where they can be anonymous, but in the case of illness, i find it to be quite the opposite, because people are frightened by their own mortality and vulnerability, and we are walking reminders of both.
So while i may have come to terms with having lupus, I realize the rest of the world has a long way to go in coming to terms with their own vulnerabilities. My not talking about lupus openly amongst "earth people" has nothing to do with my own acceptance of the illness, as much as not wanting to subject myself to the weird and sometimes cruel responses of others. Which is something I have accepted.