The chronic pain experience
Living with chronic pain can be a daily, if not hourly, challenge. And it isn’t always easy to tell how much pain someone is experiencing by looking at them.
Chronic pain can stem from lower back pain, arthritis, migraine, fibromyalgia, multiple sclerosis and other conditions.
“Living with chronic pain varies from person to person — it’s a broad spectrum,” says Meghan Beier, a clinical psychologist and assistant professor of physical medicine and rehabilitation at Johns Hopkins University School of Medicine. “Some people are able to manage the pain reasonably well. For others, it’s quite debilitating. It affects every aspect of their life.”
Lindsey de los Santos, 46, a fourth grade teacher and writer in Kansas City, Missouri, can attest to this. Ten years ago, her migraine attacks changed from episodic to chronic.
“Living with chronic migraine has affected every area of my life — my job as a teacher, my ability to socialize, do things with my family and participate in fitness activities,” says de los Santos, a mother of two. “Chronic pain is not kind, and it requires extreme persistence and perseverance. People don’t always get it. I don’t fault them necessarily. It’s hard to look at someone and know what’s going on inside.”
In her view, “conversation is a good place to start,” but it has to be handled the right way.
Navigating conversations
An estimated 52 million adults in the U.S. have chronic pain, which — by definition — lasts for three or more months, according to the Centers for Disease Control and Prevention. Living with it is far from easy. As a result, navigating conversations with people suffering from chronic pain can be tricky and delicate. There are questions and statements that may seem innocuous, but to those who live with chronic pain day in and day out, they may be upsetting.
Chronic pain is often not visible to other people.
“They may not be able to see the problem, and they may be confused about what to say or do,” says Steven Tovian, an adjunct professor of psychiatry and behavioral sciences at the Feinberg School of Medicine at Northwestern University in Chicago. “People are relatively uninformed about chronic pain. They may assume that pain is temporary, that it can be treated and it will resolve. That’s not always the case.”
That’s why it’s important to be thoughtful about how we talk to people whose life is marked by chronic pain.
Here are things people often say to those with chronic pain but shouldn’t, along with suggestions for what to say instead:
You don’t look like you’re in pain.
While you might see this as a compliment, it could be interpreted as disbelief that the person is actually feeling as bad as they do or a suggestion that their pain isn’t real.
One way or another, “it invalidates the person’s experience,” Beier says. This is especially problematic, she says, because people with chronic pain often feel unheard, unseen and misunderstood.
“Invalidation is incredibly hurtful,” says Maria Espinola, a clinical psychologist and CEO of the Institute for Health Equity and Innovation in Cincinnati. “It increases stress, which can add to the pain.”
Given that you can’t tell by looking at someone how they feel, it’s better to ask questions like:
— How are you feeling today?
— How can I be supportive?
— How are you feeling compared to how you usually feel?
You could also tell the person that you’d like to understand their pain experience better and ask questions like: Is the pain always the same or are there times in the day when you feel better?
This way, “you’re acknowledging the person is in pain and you’re interested in learning more about what they’re experiencing,” Espinola says. “Being listened to is really helpful in itself.”
Have you tried _______?
Whether the blank is filled with a suggestion to try specific medications, dietary changes or alternative-complementary medicine techniques, such as acupuncture or homeopathic remedies, these recommendations are rarely appreciated, experts say.
“A lot of times people try to give solutions rather than listening or showing compassion or empathy to the person with chronic pain,” says Ranak Trivedi, an assistant professor in the department of psychiatry and behavioral sciences at Stanford University. “Many times people with chronic pain have tried the obvious things.”
As a result, the suggestions can feel patronizing.
A better approach, Trivedi says, is to ask which pain treatments or strategies the person has tried that helped, at least somewhat.
“You might learn that the person has tried some of the things you were going to suggest,” Trivedi says.
Are you sure you’re following your doctor’s orders?
This kind of question has the effect of essentially blaming the person for their pain or accusing them of not taking good care of themselves.
“It’s often assumed that people with chronic pain are not compliant with treatment — most are,” Tovian says.
It’s better to ask questions about whether the person feels satisfied with the medical care they’re getting. To that end, Tovian recommends asking:
— Have you talked to your doctor about the chronicity of your pain?
— Is your medical team aware that this hasn’t gotten better?
Sometimes, well-intentioned people suggest that someone with chronic pain needs more medicine, but that’s not always the answer.
“Getting more medications is overly simplistic,” Tovian says. Pain medicines have side effects. They can make people foggy, and some pain medications can be addictive.”
Chronic pain is a difficult, complex condition to treat, and relief doesn’t always come quickly.
“It requires a very individualized treatment plan,” Tovian adds.
It must be nice to get some time off.
This is often said when someone with chronic pain takes sick days or sick leave. But it doesn’t feel “nice” to them because they’re in pain. They’re not feeling good or enjoying themselves.
“It’s such an insensitive comment,” Espinola says. “People with chronic pain often feel distressed about not being able to function.”
In situations like this, it’s best to acknowledge that they’re in pain, Espinola says, and ask if there are things they can do, such as spending time outside, that might help them feel a little better. In that case, you could offer to go with them. Or, you could offer to help in a specific way by saying something like “I’m going to the grocery store. Can I get you anything?”
At least it’s not cancer.
With a statement like this, you’re essentially comparing the person’s pain with cancer, a life-threatening disease.
“What you are really saying is ‘I am judging your health condition against something I find to be really scary,’ rather than validating that the person is suffering,” Trivedi says. “People often don’t realize how much someone with chronic pain is suffering.”
Think about what’s motivating you to say this — or something like it: It could be worse. If you’re trying to be helpful and sincere or you want to strike a note of optimism, you could say:
— I hope you get some relief from this pain soon.
— I’m sorry you’re dealing with this. This has to be hard.
Ultimately, it’s important to avoid “compare and despair” moments, Beier says. It’s an unhelpful thinking style, and it could inadvertently add to the person’s distress. Instead, she adds, it’s better to simply focus on what the person is telling you and be supportive.
I guess you’re going to have to toughen up.
Some people show all the sensitivity of a drill sergeant when dealing with those in pain. Telling someone “We all experience pain,” or to “Buck up,” “Grin and bear it,” “Put on a happy face” or “Keep going” sends the message that their pain is insignificant or unimportant. It’s actually counterproductive and not a motivator.
Instead, it’s important to practice empathy, compassion and respect to show your support. You could say:
— I’m impressed by how well you’re handling this.
6 things you should never say to someone with chronic pain:
— You don’t look like you’re in pain.
— Have you tried _______?
— Are you sure you’re following your doctor’s orders?
— It must be nice to get some time off.
— At least it’s not cancer.
— I guess you’re going to have to toughen up.
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What Not to Say to People With Chronic Pain — and What to Say Instead originally appeared on usnews.com
Update 07/28/23: This story was previously published at an earlier date and has been updated with new information.
