How to Live Well with Chronic Pain and Illness

by Toni Bernhard

  33

  Appreciating the Wondrousness of the Human Body

  To be alive in this beautiful, self-organizing universe — to participate in the dance of life with senses to perceive it, lungs that breathe it, organs that draw nourishment from it — is a wonder beyond words.

  — JOANNA MACY

  IT WASN’T UNTIL I became chronically ill that it dawned on me that the human body is a truly remarkable organism. As an academic, I’d lived mostly in my mind, not my body. I knew that I depended on my body for survival, but I had very little felt-sense of it. My newfound appreciation for this extraordinary organism led me to devise a practice that focuses on the workings of the human body.

  It’s a simple mindfulness practice. I consciously bring my awareness to one of my bodily systems or organs. Then I think about how it functions, while vividly picturing it in action. One of the wonders of our internal bodily systems and organs is that, even though they’re vital to our survival, we rarely notice their functioning unless we intentionally focus attention on them.

  My favorite subjects for this contemplation are the circulatory system and the heart, the respiratory system and the lungs, and the excretory system (yup, you read that last one correctly).

  The Circulatory System and the Heart

  The circulatory system is like a network of highways inside the body that allows blood to reach each of our billions of cells. Blood brings us nutrients, water, and oxygen, and (as we’ll see under the excretory system) takes away waste, such as carbon monoxide.

  So this is my first contemplation: I picture the blood flowing through the thousands upon thousands of miles of blood vessels in my body, bringing to every cell the substances it needs to sustain life. I like to picture its work in detail, so I imagine it bringing nutrients, water, and oxygen to the tips of my earlobes, to my lips, and out to each finger and toe.

  Just as cars on the highway must be powered in order to move, our blood needs something to move it. Our hearts, of course, provide this power. To move the blood, the heart beats about 100,000 times a day. It’s about the size of a fist and yet, with a simple pumping action that we experience as a heartbeat, it keeps the blood flowing through 60,000 miles of blood vessels — yes, 60,000 miles! What an amazing organ. And so, as a second contemplation, I picture the heart as a muscle, pumping blood all around my body.

  The Respiratory System

  The heart is also part of the respiratory system. The heart pumps oxygen-depleted blood to the lungs where the blood picks up oxygen from the air we inhale. Then the heart pumps this oxygen-enriched blood throughout the body on the circulatory system’s highway of blood vessels.

  To contemplate the respiratory system in action, I picture the air from my in-breath going down to my lungs, being picked up by the heart’s pumping action, and then being sent to the cells in my body. Again, I like to imagine this work in detail, so I picture the oxygen reaching every part of my body — my scalp, my chest, my abdomen, my arms and legs… everywhere.

  The Excretory System

  The excretory system gets rid of poisons and toxins from the body — waste that, if not removed, could do us serious harm. Although the primary organs of excretion are the lungs, kidneys, and skin, once again, the heart plays a vital role. The same pumping action of the heart that brings nutrients, water, and oxygen to our cells also takes harmful cellular waste away from our cells and delivers it to one of the organs of excretion.

  If the waste is gaseous, the heart pumps it to the lungs to be excreted mostly as carbon monoxide when we exhale. If the waste is dead cells or sweat, the heart pumps it to the skin (the skin being the largest organ in the body). If it’s liquid waste, the heart pumps it to the kidneys. The heart is one busy organ! As my final contemplation, I picture the circulating blood picking up waste and toxins from everywhere in my body and taking them to the proper organ for disposal, so that my body stays as poison-and-toxin-free as possible.

  Those are the three bodily systems that I include in this mindfulness practice. I could easily add others to my list, such as the digestive system, the reproductive system, the nervous system. Or I could contemplate and picture these remarkable features of my body:

  The 20–23 feet of my small intestine

  The 52 bones in my two feet (that’s a quarter of the bones in my body)

  The 36 muscles involved in making various facial expressions

  The 30,000–40,000 skin cells I’m shedding every hour

  A final note. I’m aware that some of you have bodily systems whose functioning is impaired. I do myself. Some days my heartbeat is so prominent, it feels as if my heart is beating on the outside of my body. It’s not a pleasant sensation but, then again, the function of mindfulness is to make us aware of our present-moment experience, whether it’s pleasant or not.

  The value of being aware of the present moment is that we’re more likely to make wise choices. For example, if I’m practicing this contemplation on a day when my heartbeat is uncomfortably strong, I’ll choose to emphasize the caring aspect of mindfulness. With care and compassion for my discomfort, I think about how, despite the discomfort, my heart is doing an extraordinary job of keeping me alive.

  Mindful contemplation of the wondrousness of the human body never fails to leave me in a state of awe. I hope you’ll try it.

  VII. For Family, Friends, Caregivers, and Anyone Concerned about Chronic Illness

  34

  Setting the Record Straight about Chronic Illness

  Respond intelligently even to unintelligent treatment.

  — LAO TZU

  IT’S IMPOSSIBLE to write honestly about life with chronic pain and illness without the subject of misconceptions coming up. The challenge of responding skillfully to the emotional pain of being misunderstood by those around us is a theme that runs throughout this book, because it’s a challenge that the chronically ill face at almost every turn.

  To find a measure of peace in life, we have to live as anger-free as possible, even in the midst of being misunderstood. This is not easy. With practice, however, we can learn to mindfully notice when anger has arisen; then we can consciously and intentionally choose not to feed the anger.

  The Buddha said that anger directed at another comes right back to us like fine dust thrown against the wind. This is certainly true for me. That fine dust comes right back at me in the form of emotional distress and, more often than not, intensified physical symptoms.

  My intention in discussing these misconceptions is twofold: to educate people about chronic illness, and to help those of us who have been misunderstood realize that we’re not alone. Knowing that others who are chronically ill face the same challenges I do has greatly eased the emotional pain that can so easily accompany this unexpected turn my life has taken.

  Misconception: Unless an illness is terminal, doctors can fix it.

  This is what I thought before I became chronically ill. I assumed that if I got sick, all I had to do was go to the doctor, maybe get a blood test, and then I’d be given something to fix me right up. And so when I initially got sick in Paris in 2001, I went straight to a doctor. She gave me antibiotics as a precaution, even though she thought it was a viral infection. As a result, I figured I had all my bases covered: if it was viral, it would go away on its own; if it was bacterial, the antibiotics would knock it down. I assumed I’d get better and so did everyone around me. We waited… and waited… and waited… but I never recovered. Some people I know still don’t understand why doctors can’t fix me.

  Related to this misconception is the view held by many doctors that a patient who complains of illness or pain that is not diagnosable through blood tests or other lab work has a mental disorder, such as somatization, or hypochondria. This misconception is fed by the training given to prospective doctors; they’re taught to examine, diagnose, and (if it’s not terminal) fix. But not all chronic illnesses can be explained by testing methods that are currently available to medical science.

&
nbsp; Doctors should also be taught that good medical care can include saying to a patient: “I’m terribly sorry, but I don’t know what’s causing your symptoms; however, I’ll continue to work with you to try and find an answer.” Thinking back on the two dozen or so doctors I’ve seen since becoming chronically ill, only one has said this to me.

  Misconception: If people look good, they must feel good.

  It boosts most people’s morale to try and look nice when they go out — whether they’re chronically ill or not. 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. Here is a portion of a comment left at the end of one of my online articles:

  I was bed bound for an extended period but have been ambulatory for the last couple of years. Those close to me and friends around me see my ability to get out of bed as a “completely healed” status. What they don’t see is that I still have 24/7 pain that throbs from head to toe. I still have gastrointestinal trouble and cognition problems. I push to be part of making memories with family and friends because without that there is just suffering and tears. No one sees the dark, lonely middle of the night where I can release the tears of pain and frustration from overdoing myself.

  This comment touched me deeply. I’ve had similar experiences when people see me outside the house. They say, “You look great.” I know they’re trying to be nice, so I make an effort to respond graciously — with something other than a snarky “Well I don’t feel great.” Yet the truth is, as I stand before them “looking great,” my muscles are aching and my heart is pounding so hard that sometimes I’m convinced it must be visible on the outside of my body.

  When people see someone who is struggling with his or her health, I hope they’ll remember that they, too, 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. And I hope this reflection will help them understand that a chronically ill person can look fine but feel awful.

  Misconception: A given chronic illness manifests the same way in every person.

  People can have the same diagnosis but suffer from different symptoms. Or they can have the same symptoms but at different levels of intensity. In addition, people often respond differently to the same treatment. The misconception that any given chronic illness will present with the same symptoms or will respond similarly to the same treatments leads to misunderstandings that can be hard for the chronically ill to handle skillfully. I know; I’ve had dozens of people say or write to me something along these lines: “I know someone who had what you have. She took [fill in the blank] and is fine now.”

  It’s frustrating when people presume to know more about our chronic illness than we do. And yet, as challenging as these kinds of interactions can be, we should be mindful not to feed any anger that might start to arise; we don’t want it to fly back at us like fine dust thrown against the wind! Instead, we can remind ourselves that others are acting out of ignorance, and that they’re almost always well-intentioned and genuinely trying to help. Then we can try to change the subject.

  Misconception: People are either healthy or they’re sick.

  Many people with chronic illnesses — including life-threatening ones — go through periods of remission. Most people don’t understand this. They assume that we’re either sick or we’re not. For instance, since the late 1980s, I’ve suffered from a painful bladder condition called interstitial cystitis, which can be in remission for months at a time. I can even talk myself into thinking that this is no longer one of my chronic conditions. So far, however, after every remission, it has returned with a vengeance, and the pain can be intense.

  Some chronic illnesses are episodic. People with chronic migraines — in addition to having to endure the excruciating pain of a headache — have accompanying symptoms that include nausea, vertigo, loss of hearing, and even loss of speech. Yet when they’re between episodes, they’re likely to feel fine, and so people forget that they suffer from a debilitating condition.

  Misconception: If people’s illnesses and pain conditions were truly physically based, their mental states wouldn’t affect their physical symptoms.

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

  Part I: The next time you feel under stress — maybe you’re on a tight deadline or you’re worried about a family member — stop, close your eyes, and turn your attention to how your body feels. You’ll probably notice that your muscles have tightened and your heart is beating faster. Your entire body may be pulsating, and you may even have broken out in a sweat. These are just a few of the ways that mental stress manifests in the body of a healthy person.

  Part II: Keeping that stressful mental state in the forefront of your awareness, now imagine that you suffer from chronic pain 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. Important, but often impossible. Why? Because we live in the same stressful world that healthy people live in.

  Misconception: Carefully resting for days before an event will assure that when the occasion arrives, the chronically ill will be in better shape than had they not rested.

  I can rest for several days in a row before a commitment 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 a few years ago, I asked my husband to 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 never get to see — and to meet their parents. I rested for four days before the event. But that morning, in tears, I called my son Jamal to tell him that I was too sick to attend.

  This misconception about the effects of intense rest can lead to serious misunderstandings. For example, a week after Cam’s birthday party, I was able to attend an event that was scheduled to coincide with the release of my book How to Wake Up. This could make it appear that I was choosing the book event over my granddaughter’s party, even though I was not (and thankfully Jamal understood this).

  The bottom line: the same amount of resting before each of the two events simply did not yield the same results. The unpredictability that comes with living day in and day out with chronic illness can lead to deep disappointment and sadness with our lives. If we don’t treat ourselves kindly and with compassion, this unpredictability can also lead to painful feelings of self-recrimination and guilt.

  Misconception: If people who are chronically ill are laughing and having a good time, they must feel fine.

  When an important occasion arises, people who are chronically ill have learned to bear the symptoms of illness, including intense pain. They do this partly to try and have a good time and partly not to interfere with other people’s ability to enjoy the occasion. 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: Being home all day is a dream lifestyle.

  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 such debilitating f
atigue that I can’t even read a good book”? I doubt it.

  Many years ago, I spent a long, cold winter in Winnipeg, Manitoba, where I learned a new expression for the effects of being stuck in your home day after day: “cabin fever.” That winter, this California girl was repeatedly asked, “Do you have cabin fever yet?” In fact, I did, and we moved back to California as soon as the spring thaw hit.

  Chronic illness leaves me mostly housebound. On the whole, I’ve made my peace with it. That said, I still occasionally get cabin fever. Some people find the confinement so difficult that it leads to serious emotional problems. In fact, an alternative name for cabin fever came to my attention that winter in Winnipeg: prairie madness.

  Another reason that being housebound isn’t a dream lifestyle is that people assume we’re spending the day at leisure. I’m not, and I know many other chronically ill people who aren’t either. I’m working. Writing this book is work. Responding to the hundreds of emails I get a month from people is work. Many people who are housebound by chronic illness are taking care of other family members, from little children to elderly parents. And, of course, it’s work just to stay on top of our medical conditions — keeping abreast of the latest developments, assessing doctors, evaluating the effectiveness of treatments, and keeping family and friends informed about how we’re doing.

  In the same way we’ve come to think of stay-at-home moms or dads as working people, those of us who’ve had to leave the outside-the-house workforce due to chronic illness are still working, even if it isn’t paid work. So when people say to us about our lives, “I wish I could lie around all day and do nothing,” we know they just don’t get it. Being at home (and often in bed) all day is not a dream lifestyle.