Day 210. What NOT to Say to a Chronic Illness Sufferer

I saw a great graphic on a fellow blogger’s site that should probably be required reading for just about everybody. This blogger borrowed it from chronic-illness.org, run by a cartoonist with multiple chronic illnesses.

I was happy to see a site about illness that wasn’t all about wallowing in misery (for an example, see my above paragraphs). This cartoonist has a number of funny sayings.

In large text, on one, for instance, we see “Coping,” and right afterward, the word in tiny font “sorta.”  Hilarious. I love things that tell the truth like that. Or how about “My disabling chronic condition is more real than your imaginary medical expertise.” Booya!

But I really appreciated “Things NOT to Say to Someone with a Disabling Chronic Condition.”  Maybe you have to be sick to appreciate this, but trust me; it’s funny.

My mother suggested that I preface this explication with a disclaimer.  She wants me to convey the understanding that people say things like this out of love, and because they don’t know what else to say.  Point taken.  Still.  A few of them should be without absolution.

But you don’t look sick.  How can I possibly respond to such an accusation? (Sometimes the idea is couched in “You look great,” dripping in irony, as in, “There is not a thing wrong with you, so why don’t you just cut the crap and deal with life like everyone else?”)  My current favorite is to launch into a discourse on how having a genetic defect in your collagen actually causes you to look young (it does) because the wrinkles mainly stretch out.  (Bummer that you don’t live long enough to laugh at all your elderly looking friends, but still….).

Everybody gets tired.  I get tired….of your stating truisms.

You’re just having a bad day.  Well, hell.  I have bad days a lot more than I care to count.  I particularly enjoy them in the middle of the night, when it feels like my hip joints are breaking, so I am afraid to roll over, yet have to roll over, or I’m afraid they won’t move when I wake up.  Just like you, I’m sure.

It must be nice not going to work.  I have to admit that I like being able to write, read, and paint.  But you have to understand that this is the booby prize for me.  I studied so hard to get my Ph.D. to be a college professor because I loved what I did.  It was my life, and I thought I would do it forever.  It breaks my heart not to do it still….but I dissociate myself from that pain, so that I can carry on and be a happy person.  Writing and reading both are very difficult for me anymore, painfully slow.  I am aware that its a gift that I can do them at all, and that I can learn to paint.  But it’s not nice.  

I wish I had time to take a nap.  Oh really?  I wish I could lie down and not fall asleep.  I wish I did not have perpetual exhaustion.  That’s such a self-centered thing to say to a sick person.

…If you’d get out more.  More than what?  The more I get out, the sicker I get.  The one thing a smart  person with chronic illness learns is her daily capabilities.  I’m good for one main thing daily.  Then it’s a nap, or I am sick all night and for several days beyond.  My last three experiences with pushing my tolerance have landed me in the hospital, which is its own fresh hell.

You’re just getting older.  You are too.  How do you feel?  Do you have all my symptoms?

If you’d get more exercise….  Well, if you read anything I wrote about physical therapy, hopefully you know what I would say to you about this.  Normal people make progress in six weeks of physical therapy. But you aren’t talking to a normal person.

It can’t be that bad.  Um.  For, please.   Are they _____-ing kidding?  Anyone who says this, I wish my disease on.  Did I just say that in public?  Holy smokes.  That is a pretty harsh judgment.  None of you would ever have said that anyway, right?

You’re just depressed.  Oh my.  I just had to erase a line of invective.  I have heard this one from people as illustrious as my esteemed psychiatrist, my mom, and Dr. Mean (of 365 Days fame).  It feels like the ultimate sock in the gut to hear someone say, effectively, “You’re crazy.”  It took an explosion in my leg to convince others that I wasn’t crying wolf.  By the way, I had plenty of symptoms of depression, so they thought they were doing the right thing. And yes, I have been depressed, but that was the result, not the cause of my illness. It seems to me that one keenly logical response to what I have been through might have been to become depressed.  End of story.

There are people worse off than you. I am guilty of harping on this one to myself, or of its ancillary, “It could be worse.”  Truisms.  But I’m okay with them.

You’ll just have to tough it out.  This one makes me see red–in the tradition of the cartoon character bull’s eyes turning red and exploding in a rain of fury.  Maybe it has something to do with its origins for me:  On my first Girl Scout camping trip, I realized I was going to have to unroll my sleeping bag on a dirty floor and sleep with a bunch of biatches in the same cabin. Then I fell into the Chesapeake Bay.

That was the proverbial straw:  I ordered the troop leader call home because I was not staying (can you imagine what a bundle of fun I was as a child?). Guess what my dad said? “You’ll just have to tough it out.” I heard that a few other times when it would’ve meant the world to have help and support instead. So that sentence just means all kinds of fierce madness to me. Why would anyone say it to someone who is sick?

You just need a more positive attitude.  HAH!  Well, hearing this from someone who isn’t sick makes me laugh, certainly!

This too shall pass.  They can’t be serious when they say this.  It is not going to pass, unless they mean my passing on.  Hah!  Now I’m really laughing!

Well, so I thought that was worth a few laughs–maybe enough laughs to get me through sleep tonight and another session of PT tomorrow.  It may be a great one, right (I say, working my positive attitude)?

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