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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14 thoughts on “Day 210. What NOT to Say to a Chronic Illness Sufferer

    • Well that’s a good question. You could begin by flattering me with gifts of cash, fine jewelry, and designer clothing–say, a shopping spree at Neiman Marcus. Then, you could continue with gifts of travel on private jets….perhaps give the gift of a private chef….

      Well…that made me feel a LOT better just thinking of those things!! Seriously, I think that is a good question. I guess I will sit down and write a blog entry about it. How’s that?

      • I think that would be helpful to a lot of people in a lot of circumstances. I think if more “stuff” was the cure, most Americans would be healed by now. Personally, the 5000 calorie a day pain avoidance diet is my strategy, but you are allergic to everything on it! You can see how great that’s been working for me:)

  1. You may want to add comments with a religious bent:

    God doesn’t give you anything you can’t handle.
    Your pain is expiation for your sins.
    Your pain will gain you points for paradise.
    Your pain is a god given gift to complete Jesus’ redemption plan.
    We’ll pray for god to cure you.
    It is the cross that god wants to to carry.
    You should pray for acceptance.
    It is all part of god’s plan.
    You ought to look at it from god’s perspective.
    God gives the most (to handle) to those he loves the most.

    And the list of course, goes on and on. And if it pisses you off, it is because you are depressed and tired because you don’t have a positive attitude.

    • The last one makes me want to commit murder, hands down, Carlos. Religious comments I try to accept as a part of the cultural construct of the person who makes them, just the same as I would try to understand any other comment that came from another cultural perspective. THat whole dance is exhausting, of course, but it is a dance many of us do in many contexts, I submit. Yes?

  2. These are all great. Also, these all work for folks who are grieving. And they’re all kinds of shifty, aren’t they, as in “let’s shift away from your experience to make mine more comfortable”? So they remind me of the whole “Derailing” discussion that happens around, well, anything folks don’t really want to talk about but can’t just admit that: http://www.derailingfordummies.com/

  3. Those were all so horribly horrid! (“But you don’t look sick. I guess it must be because of not working and taking all those naps…”)

    Is there a good “What to Say” poster out there though? “I’m sorry.” or “That must be hard.” or whatever quickly feels like a cop out too but I don’t want to not hear about what the other person is going through so something needs to be said.

    • Now you really have me thinking, Karina. It sounds like my response would make a good blog post.

      But really, to say “I”m sorry” is never wrong. To give a hug is never wrong. To listen carefully to what the person is saying and ask questions is the kindest thing of all. That should be no problem for one of the kindest people, you, Karina.

  4. Pingback: Day 207. What to Say to Someone Who is Chronically Ill | heidiwriting

  5. This post just made my day. Thanks. I´ve been in really bad condition a year now and I´m just beginning to see that my life has not so much to offer that I expected before. Dealing with possibly serious chronical illness is hard even without comments like these, and I have heard those all. Even from those who are supposed to know me extremely well.

    Today I received my latest comment “You are doing so well today, you don´t seem feeling bad at all”. Oh yes, if doing well means person is standing upright and still walking, then I was doing well. I was exhausted, dizzy, I felt cold sweat on my skin and pain in my back and my hand felt like it was going to be numb soon. But as long as you walk and talk like normal person, you can´t be sick, can´t you?

    Dark humor is my favorite kind of humor now. I love some of my friends who can even joke with me about my condition. It´s so much easier to deal with things like this when you do it with laugh.

    • Hi Lin–your response made my day! Sorry for taking so long to tell you so! I’ve just been feeling not quite right and have not been able to get back to blogging. Thanks for inspiring me. Your kind words remind me that what I do has some value. Expect to see a posting tomorrow (or the next day).

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