Monday, May 10, 2010

Cancer and Crow's Feet: A Lesson in What Not to Say

My mother was dying of cancer—bald, one-breasted, and deep in the throes of chemotherapy—when one of her friends called her. One would hope she was calling to cheer Mom up. Not so much. “I’m sooo depressed,” the friend said. “I just don’t know what I’m going to do.” “What happened?” my mother asked. Her friend replied, “I woke up this morning and looked in the mirror, and I have crow’s feet!”

So far, my interactions with people who learn of my diagnosis have not been that gobsmacking. But people do seem to have a hard time knowing what to say to someone with a chronic illness—especially one as unfamiliar as autoimmune arthritis.

I try to avoid that awkward moment of disclosure. I’ve learned to tell the checker at the grocery store that I have a “bad back” so she’ll pack my bags lighter and put them back in the cart for me. I make good use of the phrase “health issues.” But eventually, when someone is a “regular” in your life, you have to tell them. And sometimes even near-strangers will corner you into confession, pestering you about why you can’t do something, or why you are limping, until you finally give in.

I try to keep it simple: “I have rheumatoid arthritis.” Because even though my rheumatologist hasn’t decided if I have rheumatoid, psoriatic arthritis, or both, it’s a phrase that at least some people recognize. I also try to steer the conversation away as quickly as possible. With some people, these precautions head off unfortunate remarks. But it doesn’t stop others from uninformed—even rude—comments.

I know that people don’t intend to be hurtful. These comments come from ignorance and the social pressure to say something, anything. But that “anything” often sounds like judgment or skepticism. So to help prevent those awkward moments, here’s my top ten list of what not to say.

All of these are actual comments people have made to me. (Some of them are even from dear friends who, like all of us, have experienced an unfortunate and momentary interruption of the mind-mouth connection.). My responses below have never been voiced. These are the replies I think of after the fact, but probably could never bring myself to actually say. Perhaps my unspoken responses—sarcasm and all—will provide a glimpse into how a seemingly innocent or well-meaning comment can be hurtful.

10 Things Not to Say to Someone with Autoimmune Arthritis
(And What I Wish I Had the Nerve to Say to Your Face)

10. I have a touch of rheumatoid arthritis in my left knee. No, you don’t. That’s like being a little bit pregnant.

9. You don’t look like you have arthritis. And you don’t look insensitive. But you are. Maybe I’m having a good day, or have a few hours left on my last dose of Vicodin. This is an invisible disease. Thanks for implying I’m a slacker.

8. You need to be careful if you’re taking [Advil, Tylenol, Aspirin]. It can really be hard on your [kidneys, liver, stomach]. That’s the least of my worries. The drug I’m taking is used to treat cancer. It was derived from mustard gas. It can hammer my liver and permanently damage my lungs. On the plus side, it enables me to walk. But thanks for the heads up.

7. Come on! Come have coffee with me. It will be good for you. Though I love you, dear friend, I have a limited amount of energy. Sitting in a coffee shop equals 2 fewer hours to cope with daily life. If you really want to spend time with me, help me weed the garden or clean house. We’ll get time together, and I’ll get some much needed help with the chores that I can no longer do on my own.

6. You should take glucosamine. It really helped my [insert single joint here]. The phrase “pissing in a hurricane” comes to mind.

5. You can’t possibly have arthritis. You’re too young. Really? Whew! I’m so glad this is all some big misunderstanding.

4. Have you tried [bee stings, liver cleansing, past life regression, colonics]? My [mother, sister, husband’s cousin’s ex-fiancee] swears by it. I have a great team of doctors, all of whom went to medical school. I can’t imagine why none of them thought of that.

3. My [insert single body part here] has been hurting for days. I can’t take it anymore. Shall I call the waaaahmbulance?

2. I have arthritis, too. Who’s your rheumatologist? Oh, not that kind of arthritis.

1. Is there anywhere to sit in your house that isn’t covered in cat hair? How sweet of you to notice that this disease has completely disrupted my life. There’s the vacuum. Knock yourself out.


  1. I LOVE your unvoiced replies! They all sound like things I've thought too. I especially like it when people offer random home remedies too- "You know, I've never thought of that. What a great idea. I will make certain to try that the next time there's a full moon. I really think you're on to something here." :)

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  3. @ Pig Woman,

    Actually since posting this, I've had several offers of help. A particular challenge of this disease is its invisibility. People honestly can't see how it's disrupting my life. So they don't know there's a need unless I ask. And of course, I'm about as good at asking for help as my father is--which is NOT! So a task for the next few months is for me to reimagine my day-to-day life to make it more manageable and to invite my friends and family to journey with me in this new reality. Quite the spiritual challenge for someone who'd rather hide out than admit she can't do everything perfectly all by herself. :)

  4. @ allflaredup,

    Oh yes! The home remedies! If only all we needed was in our pantry.


  5. I'm with you deac. It's hard to ask for help. Thanks for modeling it.

  6. Good day to you. :) I loved your blog. :) I have only just started reading these types of things. It made me smile very broadly. Thank you so much for your words. I have RA and Fibro and like no one in my world understands. Take care. :)

  7. forestdream,

    Thank you for your kind words. I wonder if that gap of understanding ever truly goes away. But at least we can try to explain our experiences in ways that encourage those we love to have compassion instead of judgment, and patience instead of exasperation. I hope you'll take a look at the blog list here. It's quite a community of fellow travelers. Blessings to you!