Life from my Wheelchair

Six Common Misconceptions about the Chronically Ill

This article was originally published on ProHealth.com reposted by Arthritis Care UK and is reprinted with kind permission from its author Toni Bernhard.

More often than not, chronic illness and chronic pain go hand-in-hand, so when I use the term “chronically ill,” I’m including people who are in chronic pain. My hope is that it won’t be long until these common misconceptions become uncommon ones, as people become educated about what life is like for those who suffer from chronic illness (130 million in the U.S. alone).

Misconception #1: If people look fine, they must feel fine.

Whether healthy or sick, it’s good for most people’s morale to try and look nice when they go out. I go out so seldom that I make an effort to look my best when I do. Sometimes I feel like a young child again, playing dress-up. That said, I always hope that if I see people I know, they’ll remember that looks can be deceiving.

I’ve had people say to me, “You look great.” I know they’re trying to be nice, so I make an effort to respond graciously (with something other than, “Well I don’t feel great,” spoken in an irritated tone of voice). But the truth is…there I am, “looking great,” while my body is pulsating with flu-like symptoms, my muscles are aching, and my heart is pounding so hard that sometimes it feels as if it must be visible to others on the outside of my body!

When people see someone whom they know is struggling with his or her health, I hope they’ll remember that they have days when they leave the house looking great but feeling terrible, perhaps from a bad night’s sleep or from lingering symptoms of an acute illness. If they understood that this is how most chronically ill people feel all the time, this common misconception would be well on its way to becoming an uncommon one.

Misconception #2: If people’s illness or pain were truly physically based, their mental state wouldn’t affect their symptoms.

If you’re not sick or in pain, I invite you to try this simple two-part exercise, so you can test this misconception out for yourself

Part One. The next time you feel under stress—maybe you’re angry at someone or worried about something—stop; close your eyes; and pay attention to how your body feels. Can you feel that your muscles have tightened? In addition, your heart may be beating faster and your whole body may be pulsating. You may even have broken out in a sweat. These are just some of the ways that mental stress manifests in the body of a healthy person.

Part Two. Keeping that stressful mental state in the forefront of your awareness, now imagine that you suffer from chronic pain and/or illness. What would happen? Your body would respond to the mental stress the same way it did for you as a healthy person. But now, that response would be in addition to your chronic, everyday symptoms. And if those symptoms happen to overlap with the physical symptoms that accompany mental stress—tightened muscles, racing heart, pulsating body and maybe even sweating—you can see how a person’s mental state can easily exacerbate the physical symptoms of chronic illness.

This is why keeping mental stress to a minimum is so important for the chronically ill. It’s important, but often impossible. Why? Because we live in the same stressful world that healthy people live in.

Misconception #3. Preparing for an event by engaging in “radical rest” will assure that when the occasion arrives, the chronically ill will be in better shape than had they not rested.

I can “radically rest” for several days in a row before a commitment (I’ve had some events for my new book that I’ve been doing this for) and yet, on the day of the event, feel terribly sick. Resting may increase the odds that I’ll be less sick than usual on the day of the event, but it’s no guarantee.

When my granddaughter, Cam, turned six in September, I asked my husband take me to her birthday party for a short time since it’s only an hour’s drive away. It would have been a treat to watch her interacting with her friends (something I rarely get to see) and to meet their parents. I rested for four days before the event. But that morning, I called my son in tears to tell him that I was too sick to attend.

This misconception can lead to serious misunderstandings. For example, a week later, I was able to attend an event for my book. This could make it appear that I was choosing the book event over my granddaughter’s birthday party, but I was not (and thankfully my son understood this).

The truth is that the same amount of resting before each of the two events simply did not yield the same results. That’s the unpredictability of living day-to-day with chronic pain and illness. Not only can it be a source of disappointment and sadness, but if we don’t treat ourselves kindly and with compassion, it can lead to self-recrimination and be a source of terrible guilt.

Misconception #4: If chronically ill people are enjoying themselves, they must feel okay.

When an important occasion arises, people who are chronically ill have learned to put up with the symptoms of illness, including terrible pain, so they can try to enjoy what they’re doing, especially the enriching experience of being in the company of others. Please don’t assume that a person who is laughing is a person who is pain-free, ache-free, or otherwise feeling good physically.

Misconception #5: Stress reduction techniques, such as mindfulness meditation, are a cure for chronic pain and illness.

Stress reduction techniques can be effective tools to help with symptom relief and to help cope with the mental stress of ongoing pain and illness. However, unless a person suffers from a distinct disorder called somatization (in which mental or emotional problems manifest as physical symptoms), stress reduction techniques are not a cure.

Misconception #6: Being home all day is a dream lifestyle.

This misconception arises because, when healthy people entertain this thought, they’re not contemplating being home all day feeling sick and in pain! Put another way, would they say: “I wish I could be home all day with pain that no medicine can relieve”; or “I wish I could be home all day with flu-like symptoms that keep me from being able to read a book”? I doubt it.

My heartfelt wish is that people will become educated about what life is like for the chronically ill so that, some day soon, we can say that these are six uncommon misconceptions.

Toni Bernhard is the author of the award-winning How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers. Her new book is titled How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow. Until forced to retire due to illness, Toni was a law professor at the University of California—Davis, serving six years as the dean of students. Her blog, “Turning Straw Into Gold” is hosted on the website of Psychology Today. She can be found online at www.tonibernhard.com.