Even the most well-intentioned people often don’t know how to talk to the chronically ill. This is because we live in a culture that treats illness as unnatural. As a result, people have been conditioned to turn away in aversion from those who aren’t healthy, even though it’s a fate that will befall everyone at some point in his or her life.
The consequences of taking this unrealistic view of the realities of the human condition is that many people feel uneasy and even fearful when they encounter people who are struggling with their health. I admit that this was true of me before I became chronically ill. Now I find it as natural to talk to people who are chronically ill as I do to people who are the pinnacle of health.
I hope this list encourages people who know someone who is chronically ill to become more mindful of their speech. I also hope it will help those who are sick and those who are in pain feel less alone. I expect that those of you who are chronically ill will recognize many of the comments you’re about to read.
1. “You look fantastic!”
It’s a challenge to respond to comments such as “You look fantastic,” or the dreaded “But you don’t look sick,” because we know that the speaker is only trying to be nice. If we respond truthfully with “Well, I don’t feel fantastic” or “Thanks, but I feel awful,” the other person might be embarrassed or think we’re being ungrateful. I admit that I’ve never come up with a satisfactory response to this comment. I usually mumble “thanks” and try to change the subject.
2. “You just need to get out more often.”
One day, my husband and I were at an espresso place and a woman who knows I’m sick stopped and said to me, “You look so good!” My husband politely responded that actually, I was quite sick. When she then said to me, “You just need to get out more often,” I was at a loss for words. My husband told me afterward that he wanted to say to her, “You don’t heal a broken leg by going for a hike.” He held his tongue because he thought she might take it as an insult.
3. “Give me a call if there’s anything I can do.”
I’ve been on the receiving end of this well-intentioned comment many times. Not once has it resulted in my picking up the phone. The offer is too open-ended. It puts the ball in my court and I’m not going to hit it back, either because I’m too proud, too shy, too sick—or a combination of the three. I’m not going to call and say, “Can you come over and weed my garden?” But if someone were to call and offer to come over and do it, I’d gratefully say, “Yes!”
4. “I wish I could lie around all day and do nothing.”
A friend said this to me over the phone; it’s stuck in my mind all these years because it hurt terribly at the time. It may sound as if it couldn’t possibly have been well-intentioned and yet, given the tone of voice in which it was delivered, I’ve decided it was. I’m sure that my high-powered, overworked friend was genuinely thinking, “Lucky you to have so much leisure time.”
When she said it, I was still so sensitive about being sick—including being worried that people might think I was a malingerer—that tears came to my eyes. I wanted to scream at her, “You have no idea how it feels to be stuck in bed and have no choice but to do nothing!” Instead, I mumbled something and made an excuse to get off the phone because I could feel the sobs coming—which they did as soon as I hung up.
5. “Disease is a message from your soul, telling you that something is wrong with your True Self.”
This is an excerpt from one of dozens of emails I’ve received from people trying to diagnose or cure me. I must admit that I have no idea what the sentence means. Are the soul and the True Self different entities, and the one that is okay is sending a message to the other one saying that something’s wrong with it? Bottom line: This is not helpful. And while we’re on the subject of “not helpful,” another person said she’d help me get my health back—free of charge—by showing me how to perform a “soul retrieval.” Sigh.
6. “My sister-in-law’s best friend had what you have and said she got better by drinking bottled water.”
Little did this speaker realize that it’s just as likely that my own sister-in-law’s best friend had what I have and told me that I could get better if I stopped drinking bottled water! It would be such a relief if people understood that, despite their best intentions, we’re unlikely to want advice on treatments—unless we ask for it, of course. Most of us have spent hours on the internet, researching possible treatments. We know what’s available, and we know what we’re considering. When people offer treatments, especially based on anecdotal evidence, it puts us in a position of having to defend our treatment decisions.
Another piece of treatment advice that many of us have heard multiple times: “Have you tried sleeping pills?” Sleeping pills? Who hasn’t tried sleeping pills? Even healthy people do. Sleeping pills may be helpful for some people, but they are not a cure for chronic illness. Regarding any comment that starts with the phrase “Have you tried…”: If it’s available by prescription or as a supplement or even as Chinese herb, the odds are very high that I know about it and that I’ve tried it!
7. “Do you meditate?”
Yes, I meditate—although, depending on our relationship, this may be an intrusive question. Meditation and other stress-reduction techniques can help with symptom relief and with the mental stress that often accompanies ongoing pain and illness. However, they are not a cure for a physically based chronic illness.
8. “Aren’t you worried that you’re getting out of shape from living such a sedentary lifestyle?”
Uh…yes. Thanks for reminding me.
9. “Just don’t think about it.”
This comment left me speechless…but still thinking about “it.”
10. “Are you eating enough fruits and vegetables?”
As many as this one body can hold!
11. “Have you googled your symptoms?”
Let me count the ways.
12. “At least you still have your sense of humor.”
Thanks. Truth be told, however, I’d rather be a humorless healthy person.
© 2015 Toni Bernhard, How to Live Well with Chronic Pain and Illness. Reprinted by arrangement with Wisdom Publications, Inc.
[This story was first published in 2015]