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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: The way a person looks reflects how he or she is feeling physically.
When 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 others 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. 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 mental state (emotional stress for example) makes them feel worse physically, then their chronic illness cannot possibly be physically based.
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 feel better 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.
This misconception can lead to friendship-threatening misunderstandings if, for example, a chronically ill person has to skip one event but then not another one, even though he or she engaged in the same amount of rest leading up to the two occasions.
The truth is that the same amount of resting before each of two events may not yield the same results. That’s the unpredictability of living day-to-day with chronic pain and illness. It can lead to feelings of terrible guilt, which is why it's essential that the chronically ill treat themselves with self-compassion.
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.
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Johannes Vermeer (1632-1675)
Misconception #6: Being home all day is a dream lifestyle.
Maybe. But is being home all day feeling sick and in pain a dream lifestyle? I think not. It would be wonderful if healthy people could remember that the chronically ill aren't home all day frolicking around, doing whatever strikes their fancy. They're often bed-bound or couch-bound...and in terrible pain.
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My heartfelt wish is that people will become educated about what life is like for the chronically ill.
I hope that, some day soon, we can say these are six uncommon misconceptions.
© 2013 Toni Bernhard. Thank you for reading my work. I'm the author of four books:
How to Be Sick: Your Pocket Companion (for those who've read How to Be Sick and for those who haven't). 2020
How to Live Well with Chronic Pain and Illness: A Mindful Guide (2015)
How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow (2013)
All of my books are available in audio format from Amazon, audible.com, and iTunes.
Visit www.tonibernhard.com for more information and buying options.
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You might also like "Confessions of a Sick Person."
