30 Things About My Invisible Illness You May Not Know

[marcmagus]

A friend recently posted this in their journal. I've spent the last hour trying to get to sleep but finding myself going through a range of thinking about my own responses to this and how the questions resonated with me, and questioning whether I'm sick enough to be able to legitimately respond to this. I got myself pretty worked up being worried

Comments

[adfamiliares]

Most vexing! I hadn't realized how painful and obtrusive this arm thing was.

I think you should make up a name for your ailment, to give people something other than carpal tunnel to put in the mental "what's wrong with Marc" box. Mysterious arm dysfunction (MAD)? [Long German/Russian last name] Syndrome? Or have you tried this already?

Many apologies if, as seems likely, I've forgotten what was wrong with you at some point and unthinkingly filled in carpal tunnel.

[marcmagus]

Thank you. Neither had I, really; it's become a lot more apparent as I've been looking at why I was so afraid to go back to work, and then been paying more attention to how much it affects. You mostly interact with me in the context of an activity that isn't much affected by it, so it's not that surprising you wouldn't realize; especially as I don't typically advertise it. [Sadly, is has reduced my ability to particpate in other forms of dance

[miintikwa]

I am sorry for your pain.

And I relate so much to the 'huh, weird' thing. :( Here's to figuring out what's wrong, at the very least.

[marcmagus]

Yeah, I'm sure you do. Thank you.

I'm sory I've been so quiet in response to your illness. I haven't known how to say anything more than "*hug*", and felt that was inadequate. I never quite made the connection that it might be inadequate, but complete silence was probably worse. So I apologize for my silence, and I'm sorry for your pain.

You're one of the people I had in mind when I referred to friends with probably more severe problems.

[miintikwa]

Empathy is never inadequate. I accept your apology. However, I feel it isn't necessary. I know you well enough to know that your silence wasn't out of disbelief or suspicion, and those are the only silences that hurt. Still, thank you for your compassion. :)

Also, a very wise friend once told me that pain is not a game that can be 'won.' There is no competition here; you have pain. That is valid, and yours is personal to you. Sharing our pain, sharing our experiences of pain, does not invalidate mine or anyone's. And anyone who would say "you shouldn't talk about your illness" should probably be given a swift kick in the ass. Ahem. I seem to have found a soapbox. I'll put it back. ;)

[mneme]

Hmm. I don't think I've ever asked about carpal tunnel (I have asked about the speech software thing) -- mostly because when Lisa had trouble with her hands, it was tendonitis (and I have no idea what was giving me twinges for a while, aside from the persistent back problems I've been successfully treating (finally) with good stretching (getting my brain to stretch relaxed rather than tense is an ongoing difficulty).

[marcmagus]

The speech software thing is frustrating because it seems like such a good and obvious solution on the surface of the problem (especially back when it looked like it was just typing-induced tendonitis [oh, hey, I forgot to put RSI in the list of diagnoses I've received...maybe I should edit] or somethiing).

The problem is that, frustratingly, it turns out not to have been nearly as effective as one might hope for reducing my symptoms, and is incredibly frustrating to work with, particularly in a programming context.

The reason it's frustrating to receive the suggestion is mostly that it's so incredibly common. It's clearly well-meaning and coming from people who are listening to what I've said, and so I don't get upset with people for asking it, it's just really frustrating to hear. [In some instances, it contributes to giving the impression that the person doesn't think I have any clue about RSI/computer-human interfaces, which is upsetting, but that's less common

[soulchanger]

I have basically come to terms with the fact that, because of my peculiar sleeping problems, I will never be able to regularly and comfortably sleep with another person. At first it was a big adjustment, but it's gotten to the point where the difference between sleeping alone and sleeping with someone is so great that I rarely give it a thought anymore. After a few months of not sleeping more than four hours a night, I became willing to make sacrifices. But yeah, you have my sympathies.

[gyges_kant]

I probably ought not to have suggested Before the Wind yesterday; sorry about that. I forgot how it involved holding a hand of tiny cards for the entire game, and only remembered after we were done. I'm sorry.

Oh, and although I can occasionally accept the notion of "you shouldn't compare your affliction with mine because you haven't suffered enough", in general I find it egregiously over-applied. In general, people ought not be engaged in ranking relative pains in an effort to minimize empathy.

[marcmagus]

No need to apologize, really. I appreciate your concern, but it wasn't a problem. By which I mean that playing the game had no observable effect on my pain level