The Chrysalis Incident
Before I got sick, I could get embarrassed over the slightest misstep, no matter how innocent. One of the most embarrassing incidents of my life happened over thirty years ago. My husband was a graduate student, and we lived on an apricot ranch near the university. In the summer, I helped bring in much-needed income by working in the drying sheds. My job was to take an apricot out of a crate, cut it in half, expel the pit, and put the apricot on a drying tray. It took me over an hour to finish a crate and for that effort I earned two bucks.
One morning, in excitement, I shared with a coworker that I’d just found out I was pregnant. After our lunch break, she came up to me with something pretty in the palm of her hand and said, “This is to celebrate your pregnancy.” Thinking it was a rock (she knew I collected them), I took it out of her palm without delicacy. Suddenly, it started oozing liquid on my fingers. She looked at me in horror and yelled, “What are you doing? That’s a chrysalis!”
What I’d assumed to be a rock was actually the hard skin that covers a caterpillar as it is metamorphosing into a butterfly. If a chrysalis becomes detached from the silk pad that the caterpillar has spun but is handled very gently, it can be reattached and still become a butterfly. This one would not become a butterfly. I’d seen to that.
I was so embarrassed that I spent the rest of the day feeling painfully self-conscious. I wanted to be invisible. My embarrassment was made worse by my assumption that whenever my coworker was talking to others, she was telling them about what I’d done.
This is a classic illustration of the two reasons why people get embarrassed. First, I’d set an unrealistically high standard for myself. What crime had I committed by innocently mistaking a chrysalis for a rock? Are we to never misidentify an object? Second, I was evaluating myself based on what I assumed other people were thinking about me. This intensified my embarrassment and the self-blame I was directing at myself, even though I had no evidence to back up my assumption that my coworker was talking to others about what I had done.
For over thirty years, whenever I recalled that incident, I’d suffer embarrassment all over again. I use the word “suffer” on purpose because, for decades, conjuring up that memory made me miserable.
It can be eye-opening to become mindful of some of the unrealistic standards we hold ourselves to. These are the “shoulds” we set up in our lives — shoulds that become the breeding ground for embarrassment: I should never spill a drink; I should never lose my footing, even on slippery pavement; I should never misunderstand another person’s behavior.
For most of my life, violating one of these self-selected “shoulds” has been a source of embarrassment, although the “chrysalis incident” was always the worst in my mind. If at the time I’d been able to feel compassion for myself instead of jumping straight to negative self-judgment, I could have said to my coworker something like “Oh, I’m terribly sorry. I thought it was a rock. I wish I’d have seen what it really was.” Then the momentary discomfort would have passed without lingering in my mind for decades.
Chronic Illness and Embarrassment
Ironically, being chronically ill has helped me overcome my tendency to get embarrassed — ironic, because chronic illness tends to make people more embarrassment-prone. It’s easy to see why. The unrealistically high standard at work here is that we don’t think we should be chronically ill. 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.
The first few years after I got sick, I was “chronically embarrassed” over not being able to recover my health. Other people get sick and recover. What was wrong with me that this wasn’t happening? It didn’t occur to me that I was holding myself to an unrealistic standard — unrealistic in the sense that I can’t control whether my body recovers from a virus or not.
This embarrassment was fed by my ongoing worry over what other people might be thinking about me. After all, they’re also products of this “everyone-can-be-healthy” culture. I was particularly concerned that they could be thinking I was a malingerer — someone who feigns illness in order to avoid work and other responsibilities. This led me to hide from others how sick I felt. If a colleague stopped me in the hallway of the law school during the short period of time that I continued to work, I’d lean against the wall as we chatted so he or she couldn’t tell that I was barely able to stand up. I sat in the classroom to teach, so students wouldn’t know that I was sick (although some of them figured it out). I did everything I could to hide my illness because it I felt so embarrassed by it.
Then I had a simple interaction with a neighbor that was a turning point in my life because it enabled me to begin to shed the terrible burden of embarrassment. I was in front of my house when a neighbor walked up and started chatting about the gardens on our block. After about ten minutes, I began to feel as if I would keel over if I couldn’t find some support, but there was no wall to lean against as there’d been at the law school.
In the past, this would have been the trigger for embarrassment and self-blame to arise. Instead, there was a mental shift. I now think of it as a moment when I reached out to myself with compassion. Instead of trying to hide my illness, I said to my neighbor, “I’m sorry, but it’s hard for me to stand up for long periods so I need to sit down.” And because there was no chair in sight, I sat right down on the cement sidewalk! Sitting there, I continued our chat even though she towered over me. I wasn’t embarrassed because I recognized that my intention was benevolent — to take care of myself.
Later, when I reflected on this interaction, I was astonished at what I’d done. I was a person who’d get embarrassed if I tripped on the sidewalk, but in that moment I’d been perfectly willing to sit right down on it. I reflected on what would happen if I stopped focusing on what other people might be thinking about me (which is more often than not an incorrect perception anyway). To help with this, I asked myself whether other people do the same things that I’d been judging myself so harshly for all my life. Do other people spill drinks? Yes. Do other people trip on sidewalks? Yes. Do other people misunderstand others sometimes? Yes. Do other people sometimes engage in unconventional behavior in order to protect their health? Yes!
This helped me put all those embarrassments into the larger context of what we as humans are likely to do and have happen to us. Then I purposefully called the “chrysalis incident” to mind. Might other people have mistaken that chrysalis for a rock? Yes. Might the very coworker who gave it to me have made that mistake? Of course.
Had I not become chronically ill, I might still be embarrassed about that chrysalis. Now, instead of embarrassment arising when I think of that day in the drying shed, I feel compassion for the excited young woman I was, who did nothing more than make an innocent mistake as she stood there ready to receive a gift to celebrate her pregnancy.
I hope that if you’re feeling embarrassed about the state of your health, this chapter has helped you see that you need not hold yourself to the unrealistic standard of “I shall not be chronically ill.” Bodies get sick, and they get injured and old. I also hope you won’t set this standard: “I shall not engage in any unconventional behavior to accommodate my medical struggles.” This idea is not only unrealistic; it lacks self-compassion.
Regardless of whether you make an innocent mistake (as I did with that chrysalis) or whether you behave unconventionally (as I did when I sat on the sidewalk), embarrassment serves no purpose. It’s not compassionate because it doesn’t ease your suffering — or anyone else’s. And it doesn’t promote equanimity. In fact, embarrassment and the peaceful abiding of equanimity seem to be opposites. Embarrassment is characterized by unease and discomfort because you think you should be other than what or who you are. By contrast, equanimity is char
acterized by a feeling of ease and comfort with yourself.
To find this place of ease and comfort, first acknowledge with kindness that sometimes you’ll make innocent mistakes. Second, recognize that your behavior might not always meet others’ expectations. Third, and most important for equanimity, vow to work on being okay with both of these inevitable life experiences.
IV. Special Challenges
17
Invisibility: When You Look Fine to Others
It is only with one’s heart that one can see clearly. What is essential is invisible to the eye.
— ANTOINE DE SAINT-EXUPÉRY
ONE OF THE experiences that caught me by surprise when I got sick was the realization that I’d taken up residence in a parallel universe I hadn’t even known existed: the invisible world of the chronically ill. The reason it’s invisible is that most of us who live in it don’t appear on the surface to be any different from those around us. Many of us simply don’t look or sound as if we’re sick or in pain.
Millions of people live day-to-day with medical problems that are invisible to others. This often includes conditions that are life threatening, such as cancer and heart disease. I read about a young man with primary sclerosing cholangitis, a serious autoimmune disorder of the liver. His situation was life-threatening — he was on a waiting list for a liver transplant — but on the outside he looked fine.
And I remember seeing tennis great Venus Williams on television shortly after she was diagnosed with Sjögren’s syndrome, an autoimmune disease. The announcers were talking about her illness as the camera moved in for a close-up. As I watched, I was certain that most viewers would be thinking, “But she doesn’t look sick.” I’ve met a woman online who suffers from Sjögren’s, so I knew that Williams was facing a hard struggle. I also knew that it was largely an invisible one.
There are consequences to having dual residences — in the world inhabited by the healthy as well as in the invisible world of the chronically ill. This chapter will explore them.
Guilt
Because we’re repeatedly told that we look and sound fine, many of us feel guilty about being chronically ill. We’ve talked ourselves into believing that we must be doing something wrong because we’re not “beating” it. As I’ve noted throughout the book, the culture we live in reinforces this notion. Yes, it’s okay to occasionally come down with an acute illness or be in pain due to an injury or a surgical procedure, but then we’re supposed to get better. Everyone expected it of me, and I expected it of myself.
For many years, I felt guilty that I wasn’t living up to this cultural norm. I thought I was failing an obligation to others and to myself to get better. This emotional reaction can add intense mental suffering to the physical suffering that the chronically ill are already living with every day.
The cultural message that everybody has the ability to be in good health is especially hard on young people because they face additional pressure to “hit the gym” and stay in shape. Until I became a member of the chronic illness community, I didn’t realize how many young people struggle with their health. In chapter 19, I discuss the extra difficulties they face.
These feelings of guilt may extend to those we’re closest to. In the early years of my illness, I used to sob to my husband, “I’ve ruined your life.” I count myself fortunate to have had his shoulder to cry on; many spouses and partners don’t stick around, leaving the chronically ill person alone, sometimes to raise the couple’s children. Many chronically ill parents have written to me about the terrible guilt they feel over their inability to be the active parent they’d always dreamed they’d be.
I understand what they’re going through because I had to overcome the painful guilt I felt over not being active in the lives of my two grandchildren. I had so many fantasies about what we’d be doing together. My oldest grandchild Malia lives in the city where I grew up — Los Angeles. I thought I’d be taking her to all my favorite places. My youngest grandchild Cam lives in Berkeley, only about an hour from where I live. I thought I’d be riding cable cars with her in San Francisco and taking her on bay cruises that would go right under the Golden Gate Bridge. Instead, I seldom leave the house.
It was only when I applied my mindfulness skills that I realized it wasn’t my fault that I was sick. The Buddha’s teachings were immensely helpful to me here. He offers that dose of realism I’ve referred to before: this is what it means to be born into a body. It’s part of the human experience that bodies get sick and injured and old. Once I accepted this, I was able to shed the guilty feeling that I was letting my grandchildren — and everyone else — down. Then I could embrace my life as it is — sickness included. This freed me to look for ways to connect with my grandchildren that didn’t include seeing them in person very often, such as Skyping and texting. I particularly love texting because it doesn’t matter how I look!
Embarrassment
Influenced by cultural norms, many of us worry that others are judging us negatively because of our health problems. As discussed in the previous chapter, this can be the source of painful embarrassment. And if our chronic condition happens to be invisible, that embarrassment can increase twofold.
It did for me in the early years of my illness. Because I didn’t look sick or in pain, I dreaded running into people I knew. I assumed that when they saw how normal I looked, they’d judge me negatively for not being an active member of the workforce or the community anymore. My embarrassment could be so intense that I often wished I looked as terrible as I felt.
Invisible illness can be a particular source of embarrassment for parents with school-aged children. Several of them have written to me about how embarrassed they feel when they have to decline requests from other parents or school officials to take a more active role in their children’s activities, such as chaperoning field trips. These parents are convinced that those around them think they’re simply trying to avoid doing their fair share.
A good antidote for embarrassment is to remind ourselves that our perceptions about others can be wrong. There’s no reason to assume that just because we don’t look sick or in pain, everyone we interact with will judge us negatively if we share that we’re chronically ill. In the same way that we hope other people will give us the benefit of the doubt, we’d do well to initially give it to them.
Fear of Being Misunderstood
The list of misunderstandings about chronic illness is a long one; I write about some of them in chapter 34, “Setting the Record Straight about Chronic Illness.” Here are three more.
Because our condition is invisible, we may be treated as lazy or as malingerers by family members, friends, employers, the medical profession, even the general public. After I was interviewed on a local National Public Radio show, I received an email from a listener telling me that he didn’t want his tax dollars going to support “an amotivational slacker.” At the time I read the email, it stung — badly. I was helped by my friend Jane; when I shared his words with her, she pointed out how unhappy he must be to have said something so cruel to me. Her response — compassion for him — dissipated the painful anger that I was directing at him.
Second, due to the lack of visible cues about our chronic illness, we are often misunderstood by the medical community. Some doctors look at us and, seeing that we look fine, prescribe strenuous exercise — the very activity that is likely to exacerbate our symptoms. Or we may be labeled as “drug seekers” in emergency rooms and, as a result, be denied necessary pain medication. Several people have told me that, unless their personal doctor is available to vouch for them, they won’t go to the emergency room, no matter how unbearable their pain becomes.
Lastly, we face misunderstanding about what it means to be disabled. Just because we’re too sick to work and be active for extended periods doesn’t mean we can’t sometimes do things around the house or have friends over.
Sometimes I don’t tell others that I’m planning to do something that healthy people do — such a
s going out to dinner. I’ve learned that other chronically ill people do the same thing. Why would we deliberately hide our plans to do something special? Because from years of living in the parallel universe of the chronically ill, we’ve learned that when people see us out and about, they’re likely to assume that our health has improved. Then we have to field well-meaning — but off-base — comments, such as “I’m so glad you’re feeling well enough to go out.” We’re not feeling well enough. We’re just doing it anyway.
Hiding plans like this does not feel good to me, especially because it includes not sharing my experience with people afterward. This, of course, increases my sense of isolation from others. To share or not to share is a balancing act that the chronically ill are continually engaged in. I’m aware that sometimes I let the scales tip in the wrong direction.
Misunderstanding what it means to be disabled can have tragic consequences. I’ve read about people who’ve had their long-term disability payments revoked because an investigator who was sent to check up on them saw them being active in some way. In one such instance, a woman lost her disability check after the investigator saw her doing light gardening in her front yard. That’s sobering: as limited as I am, I sometimes pull weeds; I can’t ask my husband to do everything.
These are some of the challenges faced by those of us whose medical conditions are invisible. It can feel as if we’re inhabiting two worlds — the one we share with the healthy and the invisible one we share with others who are chronically ill. Juggling these two worlds is a lot of work. As I’ve noted before, it’s no wonder we sometimes feel that being chronically ill is a full-time job — a job we didn’t train for and one we are often ill-equipped to perform.
Challenging though it may be, the burden falls on us to make the invisible visible to others. It’s yet another part of our “workload.” This entails educating people about chronic illness, something I discussed in detail in chapter 1.
How to Live Well with Chronic Pain and Illness Page 10
