Living with Chronic Illness and Pain

It is possible to live a full and satisfying life even when your life has been turned upside down by chronic pain and/or illness. Recently I’ve been learning more about how, from the experts: three people who are doing it themselves, and are pointing the way to others.

 

I have a personal interest in this topic – although I’m a fairly fit and healthy person, I inherited a susceptibility to certain conditions affecting my nervous system and spine. These conditions began to affect me in my early 20’s, led me to alternative and holistic health practitioners, and inclined me toward developing healthy lifestyle habits around nutrition, exercise, sleep, yoga, and meditation. My healthy habits have served me well, but have not always prevented injury and trauma that at times have led to long periods of life-limiting illness and pain. So I can relate to the struggles of my patients who are dealing with chronic illness, chronic pain, or both.

 

For many of us, these are invisible illnesses. Unless you are in a wheelchair, like Vidyamala Burch, author of You Are Not Your Pain, you may appear to be an ordinary healthy person – or at least you can pull yourself together long enough to appear so, despite your pain. One of my patients recently told me that he’d spent two hours at the mall with his teenage daughter, cheerfully interacting with everyone they met, even though his pain level the whole time was “excruciating.” No one offered him a chair or even asked how he was doing, because he’s a big guy who looks strong and healthy. Other patients have told me about being yelled at for parking in a handicapped spot, questioned when they decline social engagements, and even having their pain doubted by their own doctors.

 

Living with chronic pain or illness can be exhausting. Pain itself is ennervating, it saps your energy, and the medications that help to relieve it can make you lethargic. You probably don’t sleep well. You may be on a restricted diet, require bed rest, or spend an awful lot of time going to doctors. And although chronic pain and illness can strike at any age, it’s particularly challenging when you’re still young. At a workshop I attended recently on “Meditation for Pain Management,” a young woman in the audience asked what she should say to her friends, who think she’s joking when she says she’s in pain, and don’t understand when she declines their invitations to go out.

 

The workshop leader, Oren Jay Sofer, noted that he himself had been diagnosed with a painful and chronic illness in his 20’s, which influenced him to become a Somatic Experiencing practitioner (SE is an approach to healing trauma than involves working with the body). He talked about how socially isolating it is to live with chronic pain and illness, how difficult it is to explain what it’s like to people who haven’t experienced it, and how tiring it can be to listen to the suggestions of well-meaning friends or relatives about what you should do to “get over it” or “get well.”

 

As Toni Bernhard, author of How to Live Well with Chronic Pain and Illness, says, “Even though 130 million people suffer from chronic illness in the United States alone, we live in a culture that repeatedly suggests that, with proper diet and lifestyle changes, no one need be sick and no one need be in pain. When we’re not living up to what we perceive to be that cultural standard, we feel embarrassed.” Toni knows this because she had to give up her career as a law professor due to her illness, but she has since become a popular blogger and author, despite often being bedridden.

 

All three of these experts – Burch, Sofer, and Bernhard – found tools to help them cope with their chronic pain and illness in mindfulness meditation practice, and from the Buddhist philosophy of learning to accept and work with your suffering rather than try to escape from it. That’s not to say they didn’t also seek treatment from Western medicine, including pain-relieving medication. In fact, mediCAtion and mediTAtion are not opposite approaches at all – both help in different ways.

 

Most of my patients with chronic pain or illness must take medication, and lots of it, just to be able to function at all. But what most pain patients soon learn is that the drugs just take the edge off the pain, so one must learn to live with pain, in addition to all of the other ways in which chronic illness can limit one’s activities. This is where mindfulness and meditation can help.

 

What is pain? It is simply a neurological phenomenon, a signal from the body, calling our attention. The normal reaction to pain is to try to make it go away, and if we can’t, then to mentally push it away. But our efforts to resist feeling pain can actually make the pain worse, either because we tense up, and muscle tension can cause more pain, or because in trying to ignore our pain we may be doing more harm. While it’s a normal and adaptive coping response to “suck it up and tough it out,” if you are a person with a chronic illness, ignoring your body’s signals of pain or fatigue can have severe consequences. With chronic illness, you just don’t bounce back.

 

Mindfulness practice offers an alternative to resisting or ignoring painful or unpleasant sensations: we learn to acknowledge them, investigate them, and then just let them be. While it’s not easy to learn how to do this, once you’ve learned, it becomes so much easier to live with chronic pain or illness. We develop the capacity to choose where we place our attention, so we can notice pleasant and joyful experiences even in the midst of pain. We learn to not take our illness or its symptoms personally, so we neither blame ourselves for being sick nor feel like a victim. Instead, we can feel kindness for ourselves. And we are able to take a more pragmatic, realistic attitude toward what we can reasonably accomplish, so we don’t make our condition worse by overdoing it.