How to Be Sick

by Toni Bernhard

  Disidentifying from the inner critic brings into sharp focus the impossible standards we often hold ourselves to. All of us do this to some extent — we cling to an idea of how we think we should be — but this just encourages the inner critic to pay a visit. Then not only is it impossible for us to feel compassion for our mental or physical suffering, but we’re also unable to tap into any joy that’s present for us right now.

  I hope you’ll try one of these disidentifying techniques the next time your inner critic shows up. You’ll recognize that the critic is present because you’ll hear the words should and shouldn’t, and you’ll realize that you’re directing blame at yourself. That’s the signal to disidentify from that negative inner voice, either by giving it a name that’s not associated with you or by imagining it’s on a stage and you’re a neutral third party in the balcony being forced to listen to its negative chatter.

  Craft Phrases That Directly Address Your Suffering

  I’m always coming across articles that tell me to treat myself with compassion, but they rarely explain how to go about it. Here’s what I’ve discovered about turning self-compassion into a living, breathing practice: Rather than using nonspecific phrases such as “May I be free from suffering,” choose a set of words that speak directly to the specific circumstances that are making you sad, disappointed, or dispirited. Then repeat the phrases to yourself. I usually do this silently, but you could whisper or even talk out loud if the environment is appropriate for that.

  If speaking to yourself seems odd, reflect on how your inner critic doesn’t have any trouble speaking words of criticism to you. If you can talk to yourself in harsh and self-judgmental ways, there’s no reason not to talk to yourself in soothing, gentle, self-compassionate ways instead. If it feels fake at first, that’s okay. You’re learning a new skill and it takes time. The Buddha said that the mind is as flexible as the balsam tree, so we can change old habits and develop new, more wholesome ones. With practice, cultivating self-compassion can become a lifelong habit, one you can depend on to restore your spirits. As a bonus, when you speak this way to yourself, the inner critic doesn’t stand a chance!

  I relied on this practice during the months when I had to wait for test results relating to breast cancer. And I’ve continued to use the practice to help me cope with the possibility that the cancer might recur. It turns out that with cancer, there’s a lot of waiting. First I had to wait for test results that led to the need for a biopsy. Then I had to wait for the results of the biopsy. Then for the results of an MRI. That led to a lumpectomy, and then I had to wait more than two weeks for the results of pathology tests on my lymph nodes and on tissue samples from the surgery (thankfully, both were negative). And even after discussing the results of the pathology tests with my surgical oncologist, I had to wait to hear how the next specialists in line (the radiology oncologist and the medical oncologist) interpreted the results so they could recommend a course of postsurgical treatment. And, of course, now there’s “chronic waiting” to see if the cancer returns.

  While waiting for test results, when I felt overwhelmed by the desire to have all the answers immediately, I spoke silently or softly to myself in a kind voice: “It’s so hard to want the results right now but not have control over when they’ll be available.” When I was struggling to get to sleep one night because of anxiety over a crucial consult the next day, I said to myself, “Rest peacefully, sweet body; rest peacefully, sweet mind.” And, regarding a recurrence, I sometimes say, “It’s really tough to feel so uncertain about the future of my health.”

  Speaking to myself in this way helps me acknowledge and accept without bitterness the truth of the human condition — that there’s a lot about life that we don’t control and that not all our experiences will be pleasant. Finally, it heightens my awareness of others who are in the same situation, and this helps me feel less alone.

  I suggest you try this practice by focusing on whatever specific challenges and disappointments you’re facing. We know from the first and second noble truths that dukkha can be traced to our Want/Don’t-Want Mind, so think about something you want but aren’t getting or something you’re getting but don’t want. Then craft some phrases that directly address this suffering.

  You might use phrases such as “It’s hard to be in too much pain to go out with friends” or “I’m sad that I had to miss the party.” Be careful that your words aren’t a backdoor way to blame yourself for your limitations: “I’m so disappointed that I have to let my friends and family down again.” To see if your words are genuinely intended to alleviate your suffering, ask if these are words you’d use to comfort a loved one who shared his or her suffering with you.

  Speaking directly to the source of your suffering can also become a powerful forgiveness practice. On a day when I’m mentally low due to feeling particularly sick or in pain, I might repeat to myself, “Take care, sweet body, working so hard to support me.” When I repeat a phrase with that sentiment, I’m also forgiving myself for becoming chronically ill. This struggle with my health is not my body’s fault; it’s doing the best it can to support me.

  Finally, sometimes when I speak compassionate phrases to myself, I stroke one arm with the hand of the other — a practice I learned from Thich Nhat Hanh in his Diamond That Cuts through Illusion. This has brought me to tears sometimes, but tears of compassion are healing tears.

  Take the Initiative to Connect with Others

  The idea for this next self-compassion practice came from a talk on generosity given by Sharon Salzberg at a Spirit Rock retreat. She suggested that as soon as a thought arises to be generous (call a friend in need, give something away simply because someone admires it), we should resolve to follow through on that generous impulse even though we may subsequently try to talk ourselves out of it with thoughts such as “I’m too busy to call” or “On second thought, I want that item I was going to give away.” I had used this practice for many years. Not only did it benefit others, but I also found it highly amusing to reflect on the rationalizations I could come up with for talking myself out of that initial impulse to be generous: “Hmm, if I’m ever invited to the White House, I might want to wear that scarf . . .”

  After that transformative experience at Thanksgiving, I looked for ways to alleviate the suffering that accompanied my illness. One day, I stumbled upon a way to change Sharon’s generosity practice into a compassion practice for myself. Although the practices are quite different, I must give Sharon credit because I wouldn’t have thought of mine had it not been for the wisdom of hers.

  The practices are different because, instead of following through on an initial impulse to be generous, I force myself, in this compassion practice, to do the reverse of my initial impulse. Here’s an example of how it works. If my two children haven’t been in touch for a while, as soon as the thought arises, “Why don’t they contact me?” I immediately contact them. So instead of allowing that thought, “Why don’t they contact me?” to spin out into the many absurd storylines it could take (“They’d like me better if I weren’t sick”; “I bore them”), I “cut off the mind road” (to use a Zen saying we’ll encounter again in chapter 15) and force myself to contact them. It’s as if my “penalty” for thinking that they should contact me is that I have to contact them!

  The results are always uplifting and never fail to alleviate the suffering brought about by the proliferation of thoughts that weren’t true. When I contact my children, we talk about what they’ve been up to. We talk about my grandchildren. We share common experiences — maybe a movie or a sporting event on TV we’ve both seen. They may seek my advice. It always becomes clear as we’re talking that they’ve been thinking about me. Sometimes it turns out they’ve been busy. (Didn’t I want them to be independent as adults and to live full lives? Yes!) Sometimes it turns out they’ve been sick themselves.

  The principal feature that Sharon’s practice and my practice share is how, unless we remain vigilant by cultivating awa
reness — often called “mindfulness” — the mind can talk us into or out of just about anything, no matter how counterproductive or harmful the consequences.

  Here’s another example of how I’ve used this practice. My friend Dawn tries to visit me for a short time every week. She lives over an hour away but comes to Davis often. One time, Tony was at a meditation retreat. He’d left on a Friday. Dawn was going to visit on Tuesday. But two days after Tony left, I lost the benefit I’d been experiencing from a new treatment and had a big setback in my condition. I had to cancel our visit. She said she could visit on Wednesday instead, but I had to cancel that, too. I was just too sick.

  Come Friday night, I suddenly felt resentful that, knowing I wasn’t doing well, Dawn hadn’t checked in with me. As soon as that resentful thought arose, the “penalty” kicked in, meaning I had to cut off the negative thoughts that were about to proliferate and, instead, immediately contact her. I forced myself to pick up my laptop and send her an email. I wrote a short paragraph about my rough week and then asked how she and her family were doing. She wrote back right away. Her email started with this sentence: “I had been thinking about you, but I think I was afraid to ask you how you were doing. I won’t do that again.”

  Here I’d been judging her negatively only to find out that not only had she been thinking about me but she also had a reason for not getting in touch; sometimes it’s just too hard for people to hear how poorly a friend is doing. In addition, it turned out she’d had a particularly busy week — hosting visitors from out of town, taking care of two of her grandchildren, and negotiating the purchase of some property that was located a few hours from where she lived. A full plate indeed. Once again, the storyline I’d spun regarding someone else’s motives failed to reflect what was really going on.

  Practicing compassion is the act of reaching out to ourselves and to others to help alleviate suffering. By using the practice I just described, instead of allowing stressful thoughts about family and friends to proliferate and then fester, I consciously shift my mental state and take action. That action never fails to alleviate my suffering and, as a bonus, gives me a big lift.

  Cultivate Patient Endurance

  The fourth way I cultivate compassion for myself is to practice khanti, usually translated as “patience.” (Warning: it’s part of another Buddhist list!) Khanti is one of the ten “practices of perfection”: ten qualities that a buddha, or enlightened one, has perfected. Two of the four sublime states — kindness and equanimity — are also on this list. The other seven are generosity, moral conduct, renunciation, wisdom, energy, truthfulness, and determination. In Being Nobody, Going Nowhere, Ayya Khema says of the ten perfections, “We have their seed in us. If that were not so, we would be cultivating barren ground.”

  Ayya Khema was a native German Jew who, after escaping the Nazis, became a Theravada Buddhist nun in Sri Lanka. At a retreat in Northern California in 1996, she told us that she prefers the words patient endurance to patience alone and that maintaining patient endurance is the most difficult part of Buddhist practice. Ayya Khema’s rendering transforms what could be seen as a passive state of mind (“just be patient”) into an active practice. Patient endurance suggests that, in addition to being patient (that is, serene and uncomplaining), we actively “endure”; we survive difficulties, we face hardship without giving up.

  I include patient endurance on my list of compassion practices because it can help alleviate our suffering as we face the many difficulties that result from being chronically ill. Cultivating patient endurance can help caregivers, too, because they often find themselves in the role of “patient advocate” for their loved one.

  One recurring challenge is the uncommon number of hours spent navigating the health-care system. I’ve found that when dealing with the health-care system, if I don’t “endure” I often don’t get decent service. At the same time, if I’m not “patient” the frustration stemming from the interaction exacerbates my symptoms. Indeed, patience is a strong antidote to anger — a state of mind that is the source of so much suffering.

  One of the most trying odysseys with my health-care provider involved a prescription drug recommended to me by an expert in ME/CFS at Harvard. Of all things, it’s produced from pig’s liver. In vitro, it has proven to have antiviral qualities and is approved by the FDA to treat some skin conditions. First, I had to get my doctor to prescribe the drug. Not surprisingly, he was reluctant when I raised it as a possible treatment. This would be an off-label use of a drug so esoteric that it didn’t even appear in his prescription drug manuals. Plus, I’d have to learn to inject myself at home. It took about a month for him to read over the research materials I’d brought him and do his own investigation, but in the end he agreed.

  With that taken care of, I approached my insurance company. They had no obligation to approve this off-label use of the drug, but I thought it was worth a try because it was so expensive. After three lengthy phone calls, I succeeded in getting approval for a three-month trial period. It was February. The representative said that the three-month trial would expire on May 15. Even though these lengthy phone calls were exhausting, I was happy with this result. Little did I know the difficulties were just beginning.

  The drug was imported from New Zealand and only one pharmacy in the United States was authorized to dispense it. Despite this, my insurance company insisted I use the pharmacy that they contracted with to dispense injectable drugs. I tried over and over to explain to the representative that the pharmacy she was trying to send me to would not have access to the drug. She would not listen. At times during this conversation, I could feel impatience beginning to arise. I wanted to get pushy with her, but I knew it wouldn’t change her position and would only intensify my symptoms. As it was, I was exhausted from the interaction. “Patience,” I silently repeated to myself. “Patiently endure.”

  Like a soldier on a mission she knows cannot be accomplished, I called the pharmacy she said I had to use. To my surprise, I was told, “No problem. We’ll dispense it.” I hung up, feeling a bit sheepish. But there was no time for reflection because I had a third call to make — to my doctor to tell him to fax the prescription to this particular pharmacy. He did so. Mission accomplished?

  Oh, no.

  The next day, a woman from the pharmacy called to tell me what I already knew. I must use the pharmacy with the sole dispensing rights for the drug. And she said it was my responsibility to call my insurance company and inform them. I felt as if I were on a Möbius strip, taking action after action but always winding up back where I started.

  I took a deep breath and began again. I was already physically and mentally exhausted from spending so much time on the phone. I didn’t want to double my misery by allowing impatience to take hold. So with patient endurance as my protector, I called my insurance company and succeeded in getting the representative to phone the company’s contracting pharmacy and get confirmation that it could not dispense the medication. A couple of phone calls later and I thought everything was in place. My doctor would refax the prescription to the pharmacy with the sole dispensing rights. All I had to do was wait a few hours and then call the pharmacy to arrange for shipment.

  In excitement, I made the call. They were out of the drug. It had been shipped from New Zealand but was stuck in Australian customs. For the next three months, I called this pharmacy once a week. Each time I was given a new ETA. By the time the medication arrived in the States, it was after May 15 and so the three-month trial period approved by my health insurance company had expired. Time for yet another phone call. The insurance representative told me there was no provision for an extension of an approved trial period, so I’d have to start all over if I wanted them to reconsider approving the drug. Möbius strip. Help! Patience needed!

  In the end, I obtained this much sought-after and hard-won medication — and it did nothing whatsoever to improve my condition. But the moral of this tale is that it might have helped (it has helped others) a
nd so, looking back, it was the continual cultivation of patient endurance that gave me the opportunity to try the treatment. Patience enabled me to pursue getting the medication while keeping the exacerbation of my symptoms to a minimum. Endurance enabled me to make that “one more phone call” that eventually got me the result I was after.

  Sometimes being chronically ill feels like a full-time job. While I perform this work, I keep patient endurance at my side. It’s a self-compassion practice because it helps keep frustration and anger from arising — two states of mind that are always waiting in the wings when I have to navigate the health-care system.

  Open Your Heart to Your Suffering

  The fifth way I cultivate compassion for myself is to consciously work on opening my heart to the intense emotions — and emotional swings — that accompany chronic illness. This practice began quite unexpectedly after my daughter’s family had come up from Los Angeles for Labor Day weekend. I was three months into a new treatment and was feeling optimistic about its prospects. Tony and I thought this might be the one, and indeed, I’d been able to spend more time than usual that weekend visiting with everyone. But the morning after they left, I awoke feeling like my old sick self.

  As I lay in bed that day I began to fear that this treatment, like the others, was going to be a disappointment. The fear grew more and more intense, so I began to follow an instruction I learned early on in mindfulness practice: labeling thoughts and emotions. “Fear, fear — this is fear,” I silently repeated. Sometimes it’s difficult to label stressful mental states without falling prey to aversion, as in, “Fear; this is fear. It’s time to go away, fear. Get out of here now!” I’ve practiced labeling thoughts and emotions myriad times, both in and out of meditation, but this time something different happened. As I noted “fear . . . fear,” instead of passively waiting for it to pass on through, there was a shift in consciousness and I opened to it. Then the thought arose: “My heart is big enough to hold this fear.”