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Chronic Pain
6 Ways to Handle the Stigma of Chronic Pain and Illness
Learn how to cope with the stigma that can accompany chronic pain and illness.
Posted October 9, 2020 Reviewed by Abigail Fagan
Note: I'll be using the phrase chronic illness in this piece; it includes chronic pain.
Let me start with the dictionary definition of stigma: A mark of disgrace associated with a particular circumstance, quality, or person.
Those are strong words. Why would chronic illness be a mark of disgrace? Three reasons come to mind. First, this culture does a poor job of educating people about chronic illness. It’s seen as an aberration instead of what it truly is: a natural aspect of the human condition. We’re in bodies, and bodies get sick and bodies can develop chronic pain—at any age.
Second, being around someone who is chronically ill often makes people uncomfortable. It may trigger fear—fear that they, themselves, might develop health problems or fear of their own mortality. There’s a common expression among those who suffer from chronic illness: “Most of my friends went missing.” I know this from first-hand experience. It took me a long time not to feel bitter about friends who went missing. I finally realized that they wished me well; they were just too uncomfortable being around someone who was sick and in chronic pain (I suffer from both). No wonder those who live with chronic illness know it’s risky to share what’s going on with them (these days mostly on the phone or on the computer via email, Zoom, or FaceTime).
Third, chronic illness, especially chronic pain, is usually invisible to others. There’s no cast on our arm! This puts us in a no-win situation. If we share with others that we live every day with pain and then we’re not believed, we’re stigmatized for “making something up.” They may think we’re lying so we can duck our responsibilities. And medical personnel may treat us as drug seekers.
On the other hand, if we are believed, we may be stigmatized because others may not treat us whole, diligent human beings. They may see us as weak or deficient mentally. You can see why the invisibility of chronic illness adds to the difficulties we face.
What can you do about this stigma?
Here are six suggestions. (Some of them can be found in my new book, How to Be Sick: Your Pocket Companion.)
1. Try educating friends, family, and even co-workers about what your life is like.
As I’ve said, you’re taking a risk if you do this, but it’s one that’s been worth it with many people in my life. When trying to educate others, I suggest you be descriptive and avoid complaining (although the latter can be hard to avoid at times!). I’d include how unpredictable your illness and/or pain is from day to day and why this means you may have to cancel plans with more short notice than would otherwise be the case. Explain what a good day feels like and what a bad day feels like. If your attempt to educate others doesn’t have the desired effect, give yourself credit for trying!
2. Recognize that others’ reactions reflect their own anxiety and fear about their health.
I touched on this already. Often the stigma that’s directed at those who suffer from chronic illness reflects other people’s fears about their own health. Everyone will face pain at some point in life, and everyone will face illness. There’s no reason to take others’ behavior personally: their reaction to what you’ve shared about your health is about them, not you. I know this is easier to say than to put into practice, but keep reminding yourself that you know in your heart there’s nothing wrong with you as a person. You’re just suffering from one of those health problems that is natural to the human condition.
3. Cultivate self-compassion to ease any painful emotions you’re experiencing as a result of feeling stigmatized.
Self-compassion asks only that you be kind to yourself. I suggest that you find words that specifically articulate the emotional pain of feeling stigmatized. Once you have your words, repeat them gently to yourself. They might be: “I’m so sad that my friends disregard the fact that I’m in pain every day”; or “It hurts that people think there’s something wrong with me as a person just because I suffer from a chronic condition.”
When you give voice to your feelings in this way, you’re letting yourself know that you care about your suffering. This alone will ease your emotional pain.
4. Try “Drop It” practice to take yourself out of stressful stories you may be spinning around the feeling of being stigmatized.
It took me several years to realize that getting angry and resentful when I felt I was being stigmatized only made me feel worse. Now when I realize that I’m caught a web of stressful stories I’m making up about others’ reactions to me—angry stories that are driven by feeling misunderstood and stigmatized—I try a practice I developed that I call “Drop It.”
After generating self-compassion for my mental suffering (as described above) I gently but firmly say to myself about my anger or resentment: “Drop it.” Then I immediately turn my attention to some sensory experience—a sight, a sound, the physical sensation of my breath.
When I focus my attention on what’s happening in my immediate experience, even if it’s physical pain, at least I’ve relieved myself of painful thoughts and emotions about others. If this practice didn't work, try it again later—always beginning with self-compassion.
5. Cultivate equanimity to help you let go of any anger or resentment you’re feeling toward others over how they’re treating you.
Equanimity arises when you’re able to accept without bitterness that some people come through for you in life and some don’t. Some people may stigmatize you just because you're chronically ill.
Equanimity is a feeling of even-tempered serenity that arises when you’re able to accept your life as it is without aversion or bitterness, that is, instead of being stuck in continuous longing for it to be different. This longing for others to be the way you want them to be only makes you feel worse.
To cultivate equanimity, start by generating self-compassion for the emotional pain you're experiencing—that pain that accompanies feeling stigmatized by others. Then, just for a moment, as if you’re in a shower and the water is the stream of equanimity, let that water wash away your emotional pain. If you can do this just for a few seconds, it means…you can do it. With practice, it will become easier to do it for a longer time. That said, even a momentary “washing away” is a taste of freedom. Make a commitment to taste more! (Excuse the mixed metaphor.)
6. Stick with those who support you and, if possible, let the others slip out of your life.
It isn’t easy to let friendships go, but people tell me that when they let go of a friendship with someone they feel stigmatized by—for example, a person who says to them “You’re too young to be in pain” or “You can’t possibly be housebound with illness all the time”—they feel so much better.
I picked that first example about “being too young to be in pain,” because I’ve heard from dozens of young people who tell me that this is one of the stigmas they face: people don’t believe that young people can be in pain every day. But chronic pain and illness can enter your life at any age.
Also consider getting in touch with an old friend. Perhaps he or she has developed health challenges as you have, and you’ll immediately realize that the two of you have a lot in common. A discovery like this can rekindle a friendship fast.
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I hope that, soon, chronic pain and chronic illness will not be stigmatized in this culture. Until then, try some or all of these suggestions. For me, they are the balms that heal any mental wounds caused by feeling stigmatized by others.
Thank you for reading my work. You may also like “20 Tips for Living Well with Chronic Pain and Illness”
