05:15 pm: About invisible/chronic illness
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sir_alf found this and showed it to me a few days back. There are parts i really like, parts that have nothing to do with me and parts that apply to lots of people i know. I'm glad it's out there, and that's why i'm putting it here.
Maybe someone will find it useful.
An Open Letter to Those Without Invisible Illness or Chronic Disability.I think the parts that resonated with me first and most were "the difference between happy and healthy" and "suggesting a cure to me" - although that last one could use a little editing, i'm still glad it's up there.
I suppose that epilepsy qualifies as an invisible illness, or chronic illness. Lots of people, including me suspect that i recently lost my job because the new company wasn't willing to hire someone with a "known issue", thinking i may have been a liability; esp considering other factors surrounding my "non retention". I've had this my entire life, and it's only now that i'm getting treatment that it's interfering; so it's really hard to suddenly think of myself in these terms. To think that i may be considering other words too, if things don't change. It's been a wild ride.
Current Mood: 
tired
![[User Picture]](http://l-userpic.livejournal.com/12171821/978858) | | From: | faekitty |
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| Date: | July 3rd, 2009 03:17 am (UTC) |
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| | thanks | (Link) |
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Yeah. Not a word that think applies to me, even if some of the concepts apply broadly. I hear myself saying "no, enabled, enabled!!" Which i think i may be directly quoting you on.
But since Sep and having some things confirmed and esp since having meds turn me visibly upside down at times, i've had to deal more with the phrase "chronic illness" when explaining things to my clients and coworkers who want to know what's going on or why i'm missing a day, or their appt. They are being well intentioned, but it makes me talk about something i haven't really had to in the past (it was on a need to know basis), and i've had to find words and sometimes phrases other than "epilepsy" bc oddly enough that one scares the crap out some people. I'll have to walk this same road with future employers.
There was a point when i thought i was going to have to go on short term disability, and that is when the word itself started sinking in, even though it's a different concept.
I'd rather stay away from the word myself, and the concept altogether...and then i hit those valleys and have to explain stuff to witnesses. I need a card.
It's interesting how more people are writing about invisible illness these days. Wanted to let you know about National Invisible Chronic Illness Awaeness Week, 9/14-20, which also has a virtual conference online, M-F. Hope you will check us out and consider joining us to blog about the topic too! Blessings, Lisa
