Listening to Chronic Illness

Developing an illness has many ramifications, not least of course that the person afflicted has to endure a lot of physical pain and discomfort. Beyond that, he or she has been handed a new project: figuring out how to fit in doctor appointments, dietary changes, treatments that cause a lot of other physical symptoms, medications that need to be tracked and taken at specific times, explanations to family and friends, and so on.

They have also been handed a new trauma — they are displaced from their old role as “important person with important roles in life” to “sick person with no socially recognized identity,” and they have to determine who they are using this new perspective. Even more fundamentally, they come smack up against the fundamental questions of human existence — much as the Buddha did when he saw sickness, old age, and death — only through even closer personal contact.

Actually, you would have to be something of a hero to take on a job like this. If you were a soldier and somebody said, “This is a desperately dangerous job that has to be done,” and you stepped up, you’d be lauded and held in awe by your peers, not treated as so many ill people are — shunted off to some backwater space where you could deal with your unfortunate circumstances until you got better (kind of like being sent to your room when you were a kid).

Why are we so quick to ignore or dismiss people who are ill? Not only do we ignore their knowledge of their own illness, but we also seem to want to ignore the knowledge they have gleaned from their lives with illness. We dismiss it as unimportant, unnecessary, unrelated to our lives. Thus, we not only set them apart physically, but we also set them apart as less knowledgeable human beings whose experience is not relevant to the rest of us.

The most obvious answer for this shunning, and the one most often given, is that other peoples’ illness is frightening to us. If it’s them today, it might be me tomorrow. The fact is that nearly 50% of Americans have a chronic illness and the other 50% very likely will one day. But let’s not go there now.

Another answer is that we don’t know how to help or what to say. Maybe better to say and do nothing or offer a quick, “I’m sorry. Let me know if there’s anything I can do,” and then be done with it.

Another answer is that suffering is really painful to be around and getting involved might actually require something of us that could mess up our own relatively comfortable lives, and we don’t want any of that. In my experience, the last one is most often operative. This perspective leads us to put out ideas like, “You create your own reality,” whose underlying meaning is often, “It’s your fault and you need to recognize that and get yourself together and cure yourself.”

Sometimes one is forced to be close to suffering, unable to breeze off to some other happier, easier place (maybe you’re a parent or a sibling or a spouse), in which case most people decide that they need to make the other person better so everyone can get back to enjoying an ordinary life. This leads to fixing.

I was very good at fixing when my dad got Alzheimer’s, my mother had a stroke and broke her pelvis, and my son got ME/CFS. What this meant for me was that that I spent hours researching each of their problems so that I could come up with solutions (never mind that the actual experts had not been able to solve the problems involved). The research time meant that I spent less time with the actual problems and the people involved in them. Because I was in my New Age phase when most of these problems arose, it resulted in my recommending multiple alternative treatments, including trying to change the dietary habits of my otherwise quite amazingly healthy parents. To their credit, they ignored me.

Another tactic I employed to keep suffering at bay was optimism. Kind of like a more sophisticated version of “There, there, it’ll be ok,” I was filled with hopeful pieces of information I had gleaned in my research, positive thinking ideas, and unwillingness to acknowledge the actual misery.

I tried a number of other responses, becoming an activist, passing on words of wisdom as if the sick person were somehow a child needing my teachings, and so on, all of which only succeeded in causing the suffering person to feel more and more alone. To my current shame, I never really asked them how they were feeling and what they really needed in a way that allowed them to share deeply what was happening with them.

But finally, it seeped into me that the answer was not to push away suffering but to share it, to actually go toward it. In part, I have my husband to thank for this shift. He married into all my family problems, not grudgingly, but willingly, unafraid to be present to it all. His help also meant that I could take some of my focus off the practical and sometimes overwhelming duties of caregiving (and I do have to say in defense of myself and others in this situation that often there is very little time or emotional space for anything but managing) so that I could consider these deeper issues, could actually sit down and relate about suffering with someone who was experiencing it.

To do this can be profoundly revealing. Most of us have no idea what it is to truly suffer day in and day out, to be unable to be the person you used to be or the person you think you should be, to feel always inadequate to meet the expectations of life, to feel you are letting others down, to see the disbelief in others’ eyes, to constantly have solutions (often solutions you considered years ago) thrust upon you, and to have attitudes or judgments made about you that you have no energy to counter.

The tendency is strong among those who confront another’s suffering to want to avoid knowing, to ward off their own hopeless, helpless feelings by telling the person they shouldn’t feel that way, or that if they did or thought what you thought they should do or think, they would feel better. Or, even more cruel, to say that it’s not even true what they are telling you — it’s all in their heads.

But resisting our tendency to push away the suffering brings us closer to the actual experience of the other person, who doubtless has tried all these and many more things to shift his or her experience, and needs from us, not more things to do, not more ideas and judgments, but a real listening ear. As the Prayer of St. Francis says, “Seek not to be understood but to understand.”

Once you do this, you will learn a lot. In fact, what I found was that listening to someone who is ill is not only about helping another person, but about learning from and benefiting from their experience, actually mining this other world, this “Kingdom of the Sick” as Laurie Edwards calls it in her brilliant book by that name, for the treasures it contains.

People who are sick have explored a different country, and, like all explorers, are able to bring back new ways of seeing, different ways of doing things, new kinds of wisdom. Who might better help us to understand how to manage time, how to avoid stress, how to maintain relationships and connections when you can’t always be present, how to live without the distractions in which we are all drowning, how to perform acts of heroism every day just trying to get out of bed or take a shower, or how to live in silence, in stillness?

I discovered that not only are people who live with serious chronic illness heroes, but they are also often people with deep wisdom and amazing maturity. Over the time I have been a caretaker, I have also been a student of integral theory, from which I have learned a lot about adult development and spiritual growth. Adult development rests on a strong body of research but is surprisingly little known to the general public. The basic principle is that of evolution. We evolve as human beings, growing through stages from childhood (Piaget’s work is well known) to adulthood, and continuing to grow throughout our lifetime.

The stages through which adults grow are complex, but to simplify them greatly, we move from being egocentric and seeing the world only from our own perspective, to being “ethnocentric,” allying with a group of people like us and caring for them, to being “worldcentric” and seeing that all humans are worthy of basic human rights, and beyond that to high levels of altruism, self-actualization, and spirituality, like the description Abraham Maslow has of a grown up healthy person: someone with a “presence .. . toward unity of personality, toward spontaneous expressiveness, toward full individuality and identity, toward seeing the truth rather than being blind, toward being creative, toward being good, and a lot else . . .toward what most people would call good values, toward serenity, kindness, courage, honesty, love, unselfishness, and goodness.” ( Toward a Psychology of Being, 147).

Such a person has “a development of personality which frees the person from the deficiency problems of youth, and from the neurotic (or infantile, or fantasy, or unnecessary, or “unreal”) problems of life, so that he is able to face, endure and grapple with the “real” problems of life . . . e.g., real guilt, real sadness, real loneliness, healthy selfishness, courage, responsibility, responsibility for others, etc.” (109)

While people with illness are forced to be and may seem from the outside to be egocentric in the sense of having to care for themselves and focus on their physical well-being, their understanding of meaning of human life and their spiritual being is often way beyond the ordinary. Not everyone, of course, but many of the ill people I work with have a level of maturity that is quite amazing. In addition, they are often spiritually awake and aware. Living the life of a monk, living with physical and social deprivation, having to face deep questions (instead of running away from them by socializing, drinking, working, etc.), living with the “real” problems of life, develops in people a kind of core being that knows the truth of some of our deepest spiritual principles.

There is a koan which goes, “What do you do when you can do nothing?” Most of us spend our time frantically avoiding this question with our “ego projects,” projects that will prop up our ego and our views of life. But people with illness have to face this koan in every moment.

In this uncertain world, we need every bit of wisdom we can get. It’s time we brought people with illness into the family of humans, gave them respect, and listened to the wisdom they have to offer.