I’ve learned a lot over the past 10 months as I’ve dealt with all of my ongoing health problems, but the one issue I want to address in my next few posts is this:
The Worst Things You Can Say To Someone Dealing With A Long-Term Health Challenge
Because unfortunately, I’ve had an awful lot of experience in this particular area of late.
And so, in no special order, here we go.
1. “How are you doing/How are you feeling?”
This most likely comes as a surprise to you, because you probably feel it is a sign of your care and concern to ask this question. But speaking on behalf of chronically ill people everywhere, this question just makes us feel worse. And I’ll tell you why.
Because we are shitty. And we are TIRED of having to talk about how shitty we are all the damn time.
So if you know someone who is living with a long-term illness, and you’re ever wondering how they’re doing, DON’T ASK! Instead, just go ahead and assume that they currently fall somewhere along the following Scale Of Shittiness.
10-we wish that we were dead; we don’t understand how someone can continue to be alive while experiencing such excruciatingly unbearable pain
5-able to get dressed and sit up, but not much else
1-able to function at about 50-75% of our pre-illness ability; pain is mostly managed, but still felt; and most likely we are having to deal with some new physical problem (migraines, allergies, infections, etc.) due to our compromised immune system
So remember, when you catch yourself asking us how we’re doing that, even on a “good” day? We’re still shitty, and we’re sick of talking about it. And when we’re not shitty any more, we’ll let you know. Trust us.
2. Asking us to mathematically quantify our illness and recovery for you
What you say:
-“So, did your doctor give you any kind of time line for when you’d be over this?”
-“On a scale of 1-10, where are you today?”
-“In comparison to [some other day], where would you rate this day?”
What we hear:
-“Why aren’t you well yet?”
-“You’re still sick-geez!”
-“What’s wrong with you?”
-“You must be doing it wrong.”
-“Please ‘spin’ your process for me in a way that I can understand, and that will make me feel better.”
And, most especially, “It is really upsetting me that you are so sick, because it reminds me that this very same thing could happen to me/that I am totally powerless in this situation. But I don’t want to realize that, so you really need to hurry up and get well so that I can feel better. You need to stop upsetting me by being so sick.”
HELLO! We barely have enough inner reserves to wake up every morning and face the day. We do NOT have the energy to take care of your feelings on top of everything else, nor is it our responsibility to do so. If you’re upset by our illness, then go away and figure out some way to DEAL WITH IT YOURSELF! Our illness is not about you.
That’s probably enough for today. Stay tuned for more on this subject later in the week.
OMG! This is so true!!! I have Lupus and all the “goodies” that come with it – and this is exactly how I feel!!! I would like to print out this blog entry and make it into a tee-shirt.
Well shit, Jenny Ryan! Those are my two “caring” lines. I will admit that I say them because as a hypochondriac whose been dealing with undiagnosed shit for three years and going through “test” for the last six months, I LOVE telling people how miserable I am. I think I might be slightly more self absorbed than you though….
Good start.
The above also applies when talking to spouses of the afflicted.
I so agree Jenny! I had a chronic condition for years and I finally told all of my friends and my fella to STOP asking me how I was doing…stop telling me about new treatments…stop stop stop!!! Cuz every time they asked I felt terrible. It doesn’t feel that good to tell people over and over again how shitty everything is.
Great blog…I am going to tag this blog and write about this too:)
Awesome topic!