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On Chronic Diseases

Dear friends of an online friend...

When I see variations of "feel better soon!" on the journal of someone who's just won the Arthritis Prize, I feel sad.

Okay, no, I feel irritation.

What part of my angst is because I'm facing the prospect of living with this for the rest of my life do you not understand?

I get it. I get the "so, you should be all better now, right?" bit from my own Father, who sometimes seems shocked that yes, I'm having another flareup of an incurable ocular disease. Wow! He's only had a daughter with RA since BIRTH!

So I am admittedly a little patience-worn-thin on the topic.

I know, there's no words that work to comfort someone who's stuck with BAD THING, FOREVER. It sucks. I constantly feel like a bad friend because several people I know have serious chronic health issues, and I don't know the words other than "sorry you're feeling crummy."

And yes, sometimes I do say, "Hope you're feeling less crummy soon." Because there's remission. There's better and worse spells. There's meds that help, and more successful coping mechanisms. And you learn how to handle it so that you can live well despite it.

So maybe I'm being a hypocrite, and "feel better soon" is a perfect response.

But I've just gotten it so many times from people who have no clue that no, I'm not going to feel better, and this is going to be bothering me every day, for all that time you're talking to me... yes, it's THERE, even if I don't mention it, and even if you're helping distract me from it like someone learning to tune out the sound of a jackhammer up the street. And yes, it will be there next year, and for my next vacation, and when I'm having sex, and when I go outside to push a grocery cart... it's ALWAYS THERE, like Frodo with a Ring that he can't ever get rid of EVER......

it's not like a cold where you wish someone, "Get well soon!" and chances are they'll be fine in a week.

No. It's there. It's always there, and it forces one to assess, every day, little things like "can I keep typing on this keyboard, or must I stop?" and "can I wear those shoes?" and "can I take a hike with you today and see a show tomorrow?"

For someone with chronic illness, feel better is only, ever, a relative term.

And I feel sad seeing someone else discovering it.

And mad at myself for not knowing what words can comfort or help or cheer up somebody going through a bad spell.

This entry was originally posted at http://auronlu.dreamwidth.org/206966.html, where it has comment count unavailablecomments.


( 10 comments — Leave a comment )
Sep. 27th, 2012 12:05 am (UTC)
I feel for you. My father is the same fucking way, except he seems to think that I'm choosing to be ill, since I've been this way for so long.
Ugh, it really really sucks when that 'you're going to have this until you die' thought creeps in, and nobody seems to even try to understand what that must be like. I swear, it's like everyone else gets tired of you being chronically ill, and they act like you're actively trying to inconvenience them.
I wish I could give you some substantial comfort, but I don't know shit about RA, despite the fact that it runs in my family. But, if you'd like to rant in a little more detail, I'd love to listen.
Sep. 27th, 2012 04:34 am (UTC)
I had a chat about something like with justira a while back, and I asserted then (as I would now), that it's just a 'caring' signal, in the form of a platitude. Hell, I do it myself too.

It can be frustrating to be on the receiving end -- and we have every right to voice that frustration. But people will keep doing it, just like they say 'I'm sorry' when one of your loved one dies, even if they aren't really sorry. And it's probably not their fault. : P

I'm sure you know all this, and I'm not even sure it bears repeating. But I guess I did it anyway. *hugs*
Sep. 27th, 2012 04:34 am (UTC)
And that was not meant to be a response to the comment above.
Sep. 28th, 2012 02:49 am (UTC)
I know.
And I do it too.

I was writing this under the influence of a migraine yesterday, and think in retrospect I was being too bitchy about some of it.

*hugs back*
Sep. 28th, 2012 05:59 am (UTC)
Pht. You don't have to apologize for nuttin!
Sep. 27th, 2012 09:11 am (UTC)
I think part of it is that to a lot of people, because it's one of those things they list along with headaches and back pain on ibuprofen commercials, it's not "serious" enough to be more than polite. It can't be that bad! Just pop an Advil! You'll be right as rain, lickity-split! I don't have anything that's always present like arthritis, but I do get these wicked headaches that I can never entirely predict, and they ruin me when I get them. Vomiting, can't move, can't think, can't do anything except hurt. I quite seriously want to dig out my left eye every time I get one, and that's no attempt at humor or hyperbole. They're bad. The thing is, there's nothing I can do to get rid of them and I want to rage on people when they tell me to feel better or act like they're just some...thing. It always feels like they say those things so they feel better being around someone that hurts rather than say them because they really want you to feel better. Kind of like how someone will pass you in the hallway or greet you in line, ask how you're doing, then not listen to your response. Don't ask if you don't want to know. If you want to greet someone, simply say hello. We sometimes do things because they're expected, I think, not because we really mean what we say. That takes some of the power away from the words so when they are heard, they aren't nearly what they should be. (I'm guilty of it, but I'm trying to at least be aware of it now. I want sincerity to be felt, not obligation.)

So, I don't know. I don't think words really help when someone is going to keep hurting no matter what is said or how heartfelt it is. I suppose all you can do is listen and let them take from you what they need, when they need it. Let the person know you're there if they need you and let them make the call.
Sep. 28th, 2012 02:54 am (UTC)
I got the migraine pony yesterday! I was coming down with it when I wrote that post and spent the rest of the day curled up in the dark being nauseated. So, uh, yeah.

"How you doing?"

Yeah, it's generic. I use "hanging in there" as a default response.
Sep. 28th, 2012 02:59 am (UTC)
I tend to slip into my Joey disguise and repeat the question, but all smarmy and creepy like he did on Friends. It makes me laugh.
Sep. 27th, 2012 11:43 am (UTC)
like someone learning to tune out the sound of a jackhammer up the street.

Oh, my god, do I know this feeling.

I hear you. I really do.
Sep. 28th, 2012 02:56 am (UTC)
I know.

I wasn't sure if I should censor this so you wouldn't SEE it.

But on the other hand, I think I can honestly say, "I know how you feel." *hugs*
( 10 comments — Leave a comment )
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