How to Live Well with Chronic Pain and Illness

by Toni Bernhard

  Again, this is an equanimity practice. Unlike in the previous chapter, however, instead of the emphasis being on accepting that not everyone will behave as I want them to, the emphasis is on having that be okay with me. Do I really need everyone to understand what it’s like for me to be chronically ill? No. Do I really need everyone to step up to the plate and be as supportive as I’d like? No, I don’t.

  It takes courage to accept people as they are without anger or bitterness, even though they may be letting you down. I’ve let a few close friends slip out of my life altogether, while at the same time doing my best to wish them well. It’s been a challenge at times, but it’s better for me to stick with friends who actively support and accept me rather than spend my time with those who appear to be uncomfortable around me as I am now.

  Do not get hooked into believing you always have to “think positively.”

  This is known in the counseling profession as the “tyranny of positive thinking.” Are we never supposed to get frustrated or disheartened about our medical conditions? That would be holding ourselves to an impossible standard. People in excellent health get frustrated and disheartened at times about their lives, so of course those of us who are chronically ill do too. Our “unpositive thinking” moods can be particularly intense, because they’re often triggered by stressful thoughts and emotions that arise because of our health problems.

  I have days when I’m just plain weary of being sick. I’ve come to think of this “unpositive thinking” as a natural response to the relentlessness of chronic illness. I don’t try to force myself into thinking positively at a moment like this. I wait the feeling out, knowing that, like all feelings, it’s impermanent.

  Some people even tell us that positive thinking can cure disease. Although the mind and the body are interconnected, I do not believe that visualizing that we’re 100 percent healthy can cure chronic illness — although I’ve received dozens of emails trying to convince me otherwise.

  Do not put your pre-illness life on a pedestal.

  Most of us have a tendency to glorify the past. I used to have a recurring fantasy in which I’d recovered my health, and my husband and I had returned to our special hideaway on the island of Molokai — a rental cottage we’d discovered in 1995. It was in a lush, fragrant environment, surrounded by papaya trees. We were within walking distance of the island’s only resort. In the evenings, we’d stroll to the bar, take our drinks outside, and listen to live music while watching the island’s spectacular sunsets. We traveled to our hideaway almost every year until I got sick in 2001.

  My fantasy of returning there persisted until one day I looked on the internet and found that an economic downturn and a dispute over land rights have changed life on Molokai. Many tourist businesses have closed, including the resort we loved so much, and hundreds of residents have lost their jobs. The pictures I saw of how the island looks today bore little resemblance to the island of my fantasy.

  Life is in constant flux. The environment changes, relationships change, job conditions change, cultural norms change. There’s no reason to assume that pleasures from the past would bring us the same enjoyment should we regain our health and be able to engage in them today. (For more on this phenomenon, see chapter 29, “Beware of ‘Good Old Days Syndrome.’”)

  There’s nothing wrong with enjoying fond memories of the past, but that’s different from putting that past on a pedestal and convincing ourselves that life was perfect for us then — or even near perfect. When I find myself doing this, I consciously shift my attention to the present moment and try to get on with the day that’s unfolding before me.

  Do not call yourself names or otherwise speak unkindly to yourself when you break one of your not-to-do rules.

  Please don’t compound having broken a not-to-do rule by engaging in negative self-judgment. Most of us have been conditioned from childhood to be our own harshest critics. We hold ourselves to standards that we’d never think of imposing on others. Everyone breaks the rules once in a while. When you do, I hope you’ll forgive yourself immediately.

  That said, some people don’t know how to forgive themselves. If this describes you, try this exercise. First, write down the self-critical thought you’re directing at yourself. If you stayed out too long with friends, it might be: “I’m so stupid. I knew not to spend so much time at the mall with my friends, but I did anyway.”

  Second, call to mind a loved one — perhaps your own child or a best friend. Imagine that this person made one of those statements to you about him- or herself: “I’m so stupid. I knew not to spend so much time at the mall with my friends, but I did anyway.” How would you respond? You’d probably say something along these lines: “Please don’t be hard on yourself. You’re not stupid. You’re so isolated by illness that the prospect of spending as much time as possible with your friends was simply irresistible. Anyone might have done it.”

  Third, now say those very words to yourself. “I’m being too hard on myself. I’m not stupid. I’m so isolated by illness that the prospect of spending as much time as possible with my friends was simply irresistible. Anyone might have done it.”

  When you try this exercise, if your inner critic is strong, you may feel uncomfortable speaking to yourself in such a kind voice. It may even sound so strange and foreign that it feels fake — not genuine. That’s okay. With this exercise, you’re beginning the process of reversing conditioning that’s been a lifetime in the making. “Fake it ’til you make it” works very well in this situation!

  With practice, you can change your inner critic into an ally. This can give you the courage and the confidence to recommit to following your not-to-do list, so that you can take the best care of yourself as possible. Just remember not to hold yourself to a standard of abstract perfection. Self-compassion always comes first.

  3

  Asking for Help Can Be Your Gift to Others

  No one has ever become poor by giving.

  — ANNE FRANK

  LIKE MANY PEOPLE, I always thought that asking for help was a sign of weakness and an imposition on others. Even after I became chronically ill and sometimes needed help badly, this attitude persisted. Then I had an experience that made me realize that asking for help can be an act of kindness toward others. Allowing them to help when you’re struggling with your health makes them feel less helpless in the face of the new challenges in your life. It can mean a lot to someone to be able to aid a friend or family member who is struggling with his or her health.

  Here’s what happened that changed my outlook on asking for help. One day, my friend Dawn came to visit and showed me an exquisite handmade dress she’d just bought for her granddaughter at a local boutique. When I told her how much I loved it, she asked if I’d like to get one for my granddaughter Malia. I said, “That would be great,” and before I could finish my sentence by adding, “but I’m not well enough to go shopping,” she was out the door and on her way back to the boutique.

  She returned shortly with the dress in two sizes for me to choose from. I picked one and wrote her a check. When she left to go home, she took the one I didn’t want back to the boutique. That made three trips for her to the same store that day. I saw in her face that getting that dress for me to give to Malia was a gift from me to Dawn. She can’t restore my health, but she can buy a dress for me to give to my granddaughter, and doing it made her feel good… and helpful.

  And so I think it would be beneficial for we who are chronically ill to develop some skill at asking for help. We often need it, and most of those who care about us want to give it. I said “most” because every relationship is different. There may be people in your life who’ve never learned the joy of helping others. It’s sad for them, and yet that’s the way it is. In that case, think of other people to ask.

  It takes practice to learn to ask for help. Most of us have to overcome a lifetime of conditioning in which we’ve been taught that only the weak need help. As a result, we cling to the notion “I
can do everything myself,” even though it may no longer be the case. Try following these steps:

  1.Make a list of what you need help with: cooking, laundry, weeding, walking the dog, a trip to the hardware store, even just a shoulder to cry on. Your chances of success are higher if you give the person a specific task. We tend to think it should be obvious to others what kind of help we need, but family and friends aren’t mind readers. Even if you’re in a longstanding and close relationship, the other person doesn’t necessarily know what would be helpful to you at this moment. Tell people what you need.

  2.Write down the names of family and friends who might be willing to help. A good starting point would be names of people who’ve already offered, even if their offers were made some time ago.

  3.Match people with tasks based on their interests, strengths, time flexibility, and your comfort level with them if the task is of a more intimate nature, such as doing laundry. I read about a ten-year-old girl who earned her Girl Scout cooking badge by cooking for her housebound neighbor once a week.

  4.Now comes the tough part of this new skill you’re learning, so start modestly. Pick one thing from your list and contact the person you’ve chosen. Be direct — no passive-aggressive pleas allowed! And so instead of saying “If only I knew someone who could pick up a prescription for me,” ask outright: “Can you pick up a prescription for me? I’m not well enough to go out.” Remember, the more specific the request, the better. “Can you help with my laundry every other week?” is more likely to be successful than “Can you help with my laundry once in a while?” Even though your friend or family member is likely to say yes to both requests, the wording of the second one is too open-ended, meaning neither of you is likely to follow-up.

  The odds are high that the person you’ve contacted will be happy — and maybe even relieved — that you’ve finally asked him or her for help. Think of your request as a gift from you: it gives this person a way to not feel helpless in the face of your health challenges. If you strike out, take a deep breath and try again. Even multi million-dollar baseball players get more than one strike!

  It’s ironic that we think we’re imposing a burden on people when we ask them to do something for us — even though, if we did the very same thing for them, we wouldn’t consider it a burden. On the contrary, it would make us feel good to know that our friend or family member feels comfortable enough around us to seek our help.

  If you feel unworthy of being helped by others, bring to mind some examples from the past when people were helpful to you. Obviously, they didn’t think you were unworthy. Use those memories as a starting point for changing your self-critical thinking. It’s not a sign of weakness to ask for help. It’s an act of self-compassion.

  4

  Developing the Confidence to Say No

  To be yourself in a world that is constantly trying to make you something else is the greatest accomplishment.

  — RALPH WALDO EMERSON

  I’M TEACHING MYSELF when to say no. I was raised to accommodate others and to give their opinions about what I should or should not be doing more weight than my own. It took many years of chronic illness to realize that it’s an act of self-compassion to mindfully examine what people are asking of me and then decide for myself if I should say yes or no.

  As guidance in learning how to respond to people, I’ve been relying on the Buddha’s teachings on skillful speech; he said that we should speak only when what we have to say is true, kind, and helpful. He was focusing on what we say to other people, but I’ve also been applying his three-part test to myself. Unless saying yes would be true, kind, and helpful to me, I’m working on saying no. Here’s a look at the Buddha’s test from this different point of view.

  Would saying no as opposed to yes be true to yourself?

  Ask yourself if you’re about to say yes because doing so would be true to your values and beneficial to you. Or are you acquiescing due to social pressure? Or perhaps you feel relatively powerless in the presence of the other person (the latter is common in a medical setting).

  I spent a good part of my younger years speaking or acting to please others, even when it wasn’t true to my deepest values, and I suffered because of it. I once smiled in implied assent to a racist comment because the speaker was an influential elected official who had contributed money to my husband’s political campaign. Although it happened over twenty-five years ago, I still feel self-incrimination arise as I write about it.

  One benefit of mindfulness practice is that when you pay careful and caring attention to what’s going on in the present moment, it forces you to slow down. This can prevent you from blurting out a knee-jerk reactive yes when saying no would be true to yourself.

  I wish I’d learned the self-protective value of saying no before I became chronically ill. I could have avoided so much suffering — physical and mental. For example, after taking a semester off when I first became sick, I returned to the classroom and continued teaching part-time for another two years, even though I wasn’t well enough to be in the workforce. This may well have contributed to how ill I still am today. A half hour before my class was to begin, I’d roll out of bed, put on a professional-looking outfit, brush my hair, have my husband drive me to the law school, teach my class while sitting in a chair, and return as quickly as I could to my bed.

  I came up with strategies so I could interact with students without getting caught in prolonged conversations. For example, after class, I’d use an empty classroom to talk with students instead inviting them to my office. That way, I could get up and leave as soon as I’d answered their questions.

  During those two years, I made sure the students didn’t suffer as a result of having a teacher who was sick, but I sure did suffer. And why? Because I could not say no. I’d convinced myself that everyone around me thought I should be continuing with my career. I gave more weight to what I perceived to be their view of what was beneficial for me than I gave to my own body telling me to stop working. In this sense, I betrayed my body instead of being true to it.

  I’ve also had to teach myself when to say no to doctors. In 2009, I tripped on a step and broke my ankle. After the ankle healed, one of my toes remained painfully swollen, so my primary care doctor sent me to a podiatrist. She gave me a cortisone shot in my toe, telling me it should fix the problem. The shot didn’t help my toe; even worse, the cortisone exacerbated the symptoms of my chronic illness.

  When I returned for a follow-up appointment a few weeks later, she hurriedly said that I needed a second cortisone shot. My body and mind were silently screaming no; yet, feeling powerless in her presence, I passively sat there and let her give me the shot. Looking back on that appointment, it’s hard to believe that I didn’t say no. But I didn’t. And the result of the shot was the same: no relief for my toe and an exacerbation of my symptoms.

  Had my mindfulness skills been stronger, I would have recognized that I needed to slow down the speed with which she was conducting the appointment by telling her I wanted to think about it for a few minutes. Then I’d have weighed the pros and cons with caring attentiveness, and I would have said no.

  When you become aware that it might be time to say no, either to what you’re doing (such as continuing to work) or to what others are asking of you, stop and ask yourself what would be true to yourself. Will your response reflect your values? Will it ease your suffering — mentally and physically — as opposed to intensifying it? Finally, ask yourself what the self-protective and self-compassionate response would be in this situation.

  Would saying no as opposed to yes be kind and helpful to yourself?

  In working with this test, I apply helpful to what I think would benefit my emotional and mental well-being. Then I apply kindness to my body. Often what’s helpful to my mind is not kind to my body, and my goal is not to say yes unless all of the Buddha’s criteria are met. This means that even if saying yes would be uplifting mentally, if it’s not also kind to my body, I should be saying
no.

  Of course, the mind and body are interconnected, so separating them this way might seem artificial; yet for purposes of applying this test, it works well. For example, if someone invites me and my husband out for the evening, it might help me emotionally to say yes because I’d feel less isolated. But it would not be kind to my body — when I socialize in the evening, I invariably face a flare in my symptoms that leaves me bedbound the next day.

  Similarly, shortly after my first book was released in 2010, I was contacted by the producer of a nationwide AM radio show. The show’s host wanted to interview me about how I became chronically ill and then ask me questions about how the book might help people who are struggling with their health.

  This invitation was definitely helpful to my emotional state; it gave me such a mental lift to know that this station wanted me on its show! I was excited to be able to share my story with others and to tell them about the new book. Then the producer informed me that I’d have to be on LIVE. The show originates in New York City; my segment would air from 6:30 a.m. to 7:00 a.m. Eastern Time. I live in California — on Pacific Time. This meant I’d have to be up and ready to be interviewed at 3:30 in the morning.

  Because a good night’s sleep is essential to my ability to function, I protect it dearly. I knew that, as beneficial as this opportunity sounded for my mental well-being, it would not be kind to my body. After much deliberation, I decided that the lack of kindness to my body outweighed how helpful it might be to my mind. And so I declined the offer. I felt sad at the time, but I’ve never regretted making the decision.