One of the difficulties faced by those of us who are chronically ill (which includes chronic pain) is that others don’t understand what we’re going through. Our culture does a poor job of educating people about health challenges even though they’re a natural part of the human condition.

We wish with all our hearts that others understood these four things.

1. When you’re chronically ill, you’re likely to look fine. When I contracted a viral infection in 2001 and failed to recover (not unlike “COVID-19 Long Haulers” as they’re being called), I realized that I’d taken up residence in a parallel universe I hadn’t known existed: the invisible world of the chronically ill. The reason it’s invisible is that most of us who live there look the same as those around us. People don’t see the pain we’re in, nor do they notice when we’re leaning against a wall while visiting because it’s too hard to stand up without support.

Millions of people live day-to-day with medical problems that are invisible to others. This includes conditions that are life-threatening, such as cancer and heart disease. It also includes many people who suffer from COVID-19 symptoms, long after appearing to recover.

The lesson here: Don’t evaluate the state of someone’s health based on how he or she looks.

2. Even when illness is physically based, a person’s emotional state can affect their symptoms. Here’s a simple two-part exercise to try if you’re not sick or in pain.

Part one: The next time you feel under stress — perhaps you’re upset at someone or feel overwhelmed by commitments — stop whatever you’re doing, close your eyes and pay attention to how your body feels. Can you feel the stress in it? You may suddenly feel sweaty, your heart may be beating faster, or your whole body may be pulsating. These are a few of the ways emotional stress manifests in the body of a healthy person.

Part two: Keeping that stressful, emotional state in the forefront of your awareness, but imagine that you suffer from chronic pain or illness. What would happen? Your body would respond to the emotional stress the same way it just did for you as a healthy person. Now, however, that response would be in addition to your chronic, everyday symptoms. And if the symptoms that are due to your chronic illness happen to overlap with the physical symptoms that accompany emotional stress — sweating, racing heart, pulsating body — you can see how a person’s emotional state can easily exacerbate the physical symptoms of chronic illness.

This is why keeping emotional stress to a minimum is so important for the chronically ill. It’s important but often impossible. Why? Because we face the same stresses that healthy people do.

3. The chronically ill need you to let them know how much you want to hear about their health. This raises a dilemma that the chronically ill face all the time. If we talk about our health, we worry that others might not want to hear about it. A few years ago, a woman wrote to me about a chronically ill friend whom she loves and tries to support, but who does nothing but talk about her medical problems.

The writer said that no matter how their conversation starts, it always turns to the subject of her friend’s health. She told me that she has problems of her own that she’d like to talk about, but she never gets to share them. She wants to be honest with her friend but is afraid she’ll offend her if she tells her how she feels.

On the other hand, If we don’t talk about our health, it increases our sense of isolation because, the truth is, chronic illness is a major feature of our lives. In my case, not a day goes by without my having to think about it, and not a day goes by without it impacting me in some way. Sharing my life with others brings me closer to them.

All this is by way of illustrating that it would be a tremendous help to the chronically ill if you would let them know, by how you respond in conversation, how much you’d like to know about their health issues.

4. Being on a rigid schedule is no fun, but it’s often necessary for the chronically ill. The ability to be spontaneous is one of life’s joys, but it may not be possible for those who are chronically ill.

Again, I’ll illustrate from my own life. I can’t get through the day without one, sometimes two, naps. This means that if someone calls at 11:00 a.m. and asks to eat lunch together because I hadn’t planned my nap schedule around this unexpected invitation, I can’t go. In other words, I need at least a day’s notice so I can plan my nap schedule around an upcoming commitment.

In addition, around 7:00 p.m., I “turn into a pumpkin,” as I like to say. So, spontaneity is never in the cards for me in the evenings.
It’s frustrating that my illness requires me to be on a schedule that prevents me from being spontaneous. This frustration is compounded by the need to make excuses all the time for why I can’t do this or can’t do that.

My heartfelt wish for everyone is that you have people in your life who understand the importance of paying attention to these four points.

Toni Bernhard is the author of How to Be Sick: Your Pocket Companion, How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers (Second Edition), How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow, and How to Live Well with Chronic Pain and Illness: A Mindful Guide. She can be reached at her self-titled site, Toni Bernhard.  

Image credit: Shutterstock.com