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
comments.
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
comments.