My (chronic) friends & I have actually discussed how sometimes we wish we had cancer instead, because then there's no need to explain your unheard of complicated medical condition, or struggling to get across how it effects your life and that it's not going to get better, or fighting to be taken seriously, or trying to elicit some form of understanding or at least empathy (not sympathy, this is an important distinction) from others.
I mean, it's not nice to have either, and if you do recover, you live under the constant possibility of relapse, and not making it this time... but when you say "I have cancer" people just immediately accept it and have at least a minimum of understanding. (And for some of us, dying as a result of our conditions is a possibility anyway... and we don't get possibilities of recoveries, at best long remissions) But it is very frustrating that unless you've got cancer, you're not really sick. Unless you're completely weelchair bound, you're not really disabled.
I can see how having a solid label that people supposedly take more seriously would be nice, but it doesn't really work out that way in practical application. I've been through cancer twice, and not only have the side effects left me with other disabilities and chronic issues, it's not a universal "oh, I accept that" on the part of other people. Because you don't ever get rid of "having cancer." You can get remission, you can get no evidence of disease, but there's no getting away from it. The long-term side effects (in my case, we're talking a reach of 20+ years, and I'm only 28) on the physical and psychological levels are always there. And while people understand while you're actively in
treatment, they figure once you're done, you're back to "normal." Heaven help you if you aren't, because then you're a malingerer, a faker, someone who "enjoys" being sick because you like the attention, or you're just not trying hard enough to get "better."
So many of us don't get "better." Most survivors I know call it "new normal." You aren't ever going back to "normal" for everyone else, and for those of us who grew up with cancer, we don't know or remember "normal." We are who we are--ostomies, mobility problems (my major one), learning disabilities, vision or hearing deficits, mental health concerns, all of it and more. That's how it is, and while it's hard for the individual survivor to get through, it's apparently harder for society.
There's an unspoken societal expectation that all survivors have to be little Lance Armstrongs, walking inspirations who go about like there was never anything wrong in the first place, where you only talk about your experiences to motivate and inspire (or raise money), but otherwise need to shut up about it because good God why can't you let it go
, already? There's discrimination in the workforce (sooo many stories of illegal firings), poor accessibility in schools and public places (my campus is exhausting if you're mobility-challenged), and a general inability to wrap minds around the idea that cancer isn't just something that some dude on a bicycle deals with or that you can buy a pink ribbon trinket and forget about.
(And this is aside from the rather dysfunctional "tiers" of cancer "badness" or that someone doesn't deserve sympathy/empathy because "they brought it on themselves." I know other survivors who've had people say to them that their cancer wasn't "that bad" compared to others. Hodgkin's Lymphoma? Not that bad. Colon? Terrible. Thyca? Not that bad. Leukemia? You poor, poor soul. Or if someone has skin cancer--Well, if they hadn't been in the sun so much... One mom in our support community lost her son to lung cancer. Someone had the brass... effrontery... to imply it was because her son smoked. One, he didn't smoke. Two, like that totally invalidates someone's suffering?)
I too have had people imply I'm faking my disability. I've been told my chronic pain is in my head or that it's not as bad as all that, despite having to use crutches most of the time to get around. If I have a good day pain-wise and decide to go crutchless, well, must not really
need to take the elevator, hmmm? Random people can be jackasses about it; the last university I was at, people would let doors slam in my face or let elevator doors close on me or my crutches. I got dirty looks from able-bodied people (university athletes were usually the ones who'd pull this) when I'd squeeze onto elevators. It sucked. Here the people are nicer, even if the campus is less accessible.
I've also been infantilized in doctors' offices--apparently despite advanced education, I can't be spoken to like an educated adult. I manage my care, I do meticulous research, but it often does me no good; if I don't assert myself and my knowledge of my medical history, I get treated like a child, but if I am assertive, I get disregarded or treated even more poorly.
All it's served to do with me is make me outwardly assertive (even aggressive) about equal access and quality care, and inwardly very, very exhausted with reality. I've developed a bit of a reputation for being aggressive or even militant about people knowing (and using!) their patient rights and responsibilities. I'm also steadily turning into an ADA advocate on my campus, because this place is terrible for accessibility.
Sorry. I don't want this to come across as a rejection of how you and your friends feel; I just wanted to chime in that this is another disabled person who agrees wholeheartedly with you (loved your first post and wanted to go "Right on!" the whole time I was reading it) and comes at the same issues with a particular perspective. I get what you're saying--people "understand" cancer, but from where I sit, their actual comprehension is often zilch.
EDIT: Sorry again, I just saw the dates of the posts I was replying to. I apologize for necroposting; I usually have better manners than this.
montes parturient, nascetur ridiculus mus.