Rev. Anthony David
March 11, 2007
Today is the second sermon in a three part series on the connection between spirituality and health. Last Sunday we looked at mind-body medicine, and next Sunday we’ll explore what might be called the “enlightened diet.” As for this morning: chronic illness. I’m talking illnesses like arthritis, or depression, or Parkinson’s disease, or multiple sclerosis, or diabetes, or asthma, or fibromyalgia, or lupus, or chronic fatigue immune dysfunction syndrome—illnesses that are not like the flu and not like gallstones and not like a broken leg in that they (chronic illnesses) are with you forever and they change your life. Often the symptoms start out as vague aches and pains, or you stumble unexpectedly while walking; and though you have a sense that something is definitely wrong, the symptoms are hard to link to an easily identifiable problem, and they come and go without warning, or pattern, or explanation. It’s typical to spend months or even years knowing that something is wrong, and yet the doctors can’t find any clear-cut problems, so you come to know first hand what one sufferer from a chronic illness calls the “vicious merry-go-round: feel ill, see the doctor, leave without a diagnosis, worry.” If you are fortunate, one day the diagnosis does come, and finally, big relief, your illness has a name—but it’s the name of a chronic illness, and it is with you forever, and now everything is different—for you and for the people you share your life with. And so the questions before us this morning: how to cope? And even if one’s illness is chronic, and with you forever, is there still a sense in which healing can take place? Can there still be a triumph of the human spirit, and still much happiness and dignity and hope to fight for?
Let’s ground all this in the story of two life partners, Janice and Betty. Janice happens to have a chronic medical condition called lupus that has kept her off the job for more than three months. Everything that Janice does feels painful to her. Getting out of bed and getting dressed, especially when buttoning or snapping are involved, are almost impossible. Each little motion that people take for granted causes her pain, and it may take half the morning just for her to care for herself, make breakfast, and clean up her dishes. She must rest frequently, as she has virtually exhausted herself by performing her personal chores. Her entire day continues in the same vein, and by the time her spouse comes home, she is exhausted, has extremely painful joints, and may be running a fever.
For Janice, it’s such a frustrating situation. She’s been the primary wage-earner for the family, but at the present time, she is simply too ill to work. Her job is being held open for her while she is on sick leave, but no one is for sure how long. So her life feels on hold, she doesn’t feel like she’s contributing her fair share to the household, she’s having a hard time coping. As for Betty: Betty is working longer hours to compensate for the loss of Janice’s income. She’s working harder than ever, and then she rushes home to care for the family’s needs. She is doing the bulk of the cooking, cleaning, and shopping. She loves Janice and is absolutely committed to her, but feelings of resentment are starting to creep in. She’s having a hard time coping.
And there you have it: Janice and Betty: two people whose lives are changed because of chronic illness. Does any of this resonate with your own experience? Raise your arm, if your life has been touched by chronic illness, either by having one yourself, or by being a family member or caretaker of one who has?
Just look at that testimony…. The issue of coping is indeed critical. And there is so much to cope with. A significant part of it has to do with this: a health care system that is simply not designed to serve people with chronic illness. Chronic illnesses can require expensive prescription drugs that aren’t covered by insurance; they can require ongoing, long-term non-hospitalization care that health plans aren’t geared towards. Private insurance plans and government programs just don’t like long-term medical problems.
This point is made painfully clear by Arthur Caplan, a bioethicist at the University of Pennsylvania. He describes the plight of a girl named Loren who suffers with anorexia. That’s her chronic condition, and there is no insurance coverage for that, which means that she can receive care only if her condition degenerates to the point where her life is on the line. Only when her weight gets so low that people think she’s going to die will she be admitted for a three or four-day stay in the hospital. Her insurance carrier is always on the phone quick to demand that she be discharged since her insurance only covers required acute care services and anorexia is not in itself a basis for treatment. So this is the pattern: continual bouncing in and out of the emergency room, continual close-calls with death, with nothing actually happening to get at the underlying core of Loren's illness.
Chronic illness is like a square peg to the health care system’s round hole. Not a fit. And there’s multiple senses in which this is ironic to the extreme. Many chronic illnesses are associated with aging—like arthritis, or Alzheimer’s disease—and it is exactly because of the effectiveness of modern health care that people are living far longer than they ever have before and therefore living with chronic illnesses. But the health care system has not yet grasped the complete consequences of its own success. It helps people live longer and yet does not acknowledge the full implications of this.
Or you have a chronic illness like post-traumatic stress disorder—military vets returning home from war, and the same nation and same government that sent them over can’t guarantee adequate treatment and adequate services to help them cope. This is just wrong.
What I’m saying is that if you or someone you love has a chronic illness, then you’re going to wrestle with the existing health care system and with big medical bills. You’ll also wrestle with something else: people’s misunderstanding, people’s doubt, people’s prejudice. One thing positive you can say about a heart attack: it’s obvious. Something is wrong. Yet as for chronic illnesses: they can be haunted by vagueness and uncertainty. Hard to diagnose, and even when diagnosed, not necessarily evident to the people around you. One chronic illness sufferer says that “People can’t necessary see a chronic illness like they might see a leg in a plaster cast or a person in a wheelchair. [It’s like you are] living in the netherworld of the ‘hidden handicapped.’”
Listen to that language: “living in the netherworld of the hidden handicapped.” Isn’t that powerful? You are in that netherworld, you with your mysterious illness, and you experience a crushing loneliness. You try talking about the mysterious fatigue you feel, or aches and pains, or sensitivities, and the people around you might not understand, or they might get annoyed, or they might challenge you to prove to them that you are not being a hypochondriac, or they might even suspect mental illness. This is the netherworld of crushing loneliness, and misunderstanding, and it can get to the point that you start doubting yourself. You do. You start to convince yourself that you are just becoming klutzy, or not sleeping or eating right. It’s just temporary, it’s just all in your head, you’ll get back to normal soon….
This is a true “netherworld”—and if you are family or friend to a person who keeps on talking about mysterious medical symptoms and who’s having a hard time getting back to normal, you are in it as well. You are. What loss of control you can feel! You accompany your loved one to the doctor, and once again you endure that vicious medical merry-go-round of “your loved one feels ill, you and she or he go see the doctor, you leave without a diagnosis, you worry.” For the nth time, you experience all this, and you very naturally do wonder: is he a hypochondriac? Is it just all in her head? It’s so frightening. You just don’t know what’s going on.
This is why, for someone suffering from a chronic illness, together with family and friends, it can be a moment of true release and joy to arrive at a positive diagnosis. To be able to say: I’m not just making it up! My spouse or my friend really does have an illness. For all their aches and anxieties and complaints, finally, there is a reason. Finally there is a why. It’s lupus. It’s depression. It’s this or it’s that. But it’s something. It’s real.
The moment feels like a honeymoon. It really does. But it’s the shortest honeymoon ever. Believe it. Because soon enough, reality comes crashing in. This illness you have: it’s chronic. The illness your spouse or friend or parent has: it’s chronic. Which means forever. Life will never again be the same. There will be many losses, of varying kinds depending upon the situation: the loss of work and of the personal identity bound up in that work; the loss of financial stability; the loss of one’s capacity to do some favorite things…. Having to say goodbye to the way life used to be, to the way one’s Lover used to be, or to one’s Parent; having to dismantle the picture in one’s mind of what can be now, and what will be into the future….
Welcome to grief. Grief so intense, only a small percentage of marriages and committed relationships survive. Only 25%. Remember Janice and Betty from earlier? Welcome to their world.
Chronic illness is simply one of the most difficult challenges there is in life. And so the question before us today is: how to cope.
And here, a main thing I want to suggest is this: that coping starts by learning from the experience of people who have been there before and know the grief cycle first-hand: denial then anger then bargaining then depression then acceptance. Learning from their experience of this, how there is a consistent pattern, as well as an eventual resolution. Not necessarily a neat sequence of one right after the other; sometimes different phases can be bunched up together, or you go back and forth; but there is a direction to the energy, towards acceptance. Others have been there before, and their experience can help you understand yours.
And so you come to learn the grief pattern in people with chronic illness. The denial that takes the form of gritting one’s teeth and soldiering on as if one didn’t have an illness—together with families who enable this, who pretend that nothing has changed. That, or family and friends who all of a sudden try to take control: “Here,” they say, “you are sick; just stay in bed and we’ll take care of you.” Of course the intentions are good, yet it is the kind of care that is appropriate only for acute, short-term illnesses; they still haven’t wrapped their minds around the fact that your illness is forever, that you are going to have to leave that bed at some point, that they and you must totally reinvent what normal means. It’s denial.
And then there is anger. Intense feelings of unfairness. Against the universe. And against the people you love, because they are there. Partners sparring with each other because the anger is raw and raging and wants release. So one day you have Janice, rushing home after another long day of work, to care for Betty’s needs. One day when the anger finally explodes, and she says this to Betty: “Betty, I feel so tired when I get home from work. I know that it’s not your fault that you are ill, but it really hurts me to know that you are here and no one makes an effort to do laundry, straighten up the house, or start dinner. Don’t you care how I feel? I can’t take much more of this!” Can you see Betty saying this, and can you imagine the guilt she’ll feel later on? And as for Janice: can you imagine her own angry response, coming out of the depths of her own frustration and guilt?
Anger is part of the grief cycle, and so is this: bargaining. One way it happens takes the form of people going from one doctor to the next, or one spiritual guru to the next, hoping to find in each new doctor or spiritual leader the medicine that will cure their illness. It’s a struggle. It’s a roller-coaster. People trying to wheel-and-deal with the reality of the chronic illness, until, in the end, they realize, fully and truly, that it won’t go away.
Which ushers in the next stage of grief: Depression. People learning finally that rage won’t make the disease go away. Learning finally that wheeling and dealing won’t make the disease go away. Resulting in enormous sadness. Listlessness. Sense of worthlessness. Depression.
All these stages happen: denial, anger, bargaining, depression, until you feel wrapped up in a cocoon the color of ashes; you feel tightly bound within gray walls; and your sense of normality feels like it is melting, as well as all that you have ever taken for granted; and you wonder if and when it will ever end.
Yet I am here today to say that there is more than this. There is still yet more. It’s about trusting the process, giving yourself to the power of grief to take you all the way—not just part of the way, but all the way—to transformation and a new reach of freedom. The only bad emotion is a stuck emotion. Give yourself to the power of grief, and let it take you beyond the cocoon, to where your spirit, if not your body, will have wings.
One person with chronic illness says, “Some people have only learned to ‘put up with’ their problems. They may have given up hope. We need to tell them and show them that there is still much happiness and dignity and love to fight for.”
Another person with chronic illness says, “I’m not healthy in the way that most people use that word—physically sound. I probably couldn’t run down the beach with you this afternoon. My body won’t do that. So I’m not healthy—but I’m whole. You see, we start moving into paradoxes here. Sometimes illness evokes health in people. People who are not physically healthy can seem very healthy, very alive. And some of the most boring people are those who are jogging and eating health food as if the physical health of the body is the sole goal in life.”
Yet a third person with chronic illness says, “To suffer is not the worst thing that can happen to us; the worst thing is not to believe in anything worth suffering for.”
You see, something’s happening here. An amazing shift of perspective is in process. People suffering from chronic illness, one of the greatest challenges in life, saying, “to suffer is not the worst thing that can happen.” Grief has taken people like this beyond depression to the acceptance stage; and it’s here when one’s entire orientation to life takes on an inside-out direction. The reverse, outside-in, is when one’s physical condition determines how your spirit will be; and if your body is broken, so is your spirit. But life from the inside-out is sheer triumph. It means that even where a physical illness persists, there can still be a healing of the heart. Fearlessness can replace fear. There can be forgiveness, of self, of others, of the Universe. There can be reconciliation with one’s body, where you learn to accept it as it is and live into a newer and more appropriate lifestyle. There can be new habits of communication and relationship, between people suffering from chronic illness and their family and friends. There can also be a deeper empathy for others who suffer, and you find yourself on a new journey of service. Last thing you want is to be stuck in the bed, being served. Out of all that you have, out of the infinite depths of the Divine Spark within, you would give—even if every movement of your body brings you pain.
“To suffer is not the worst thing that can happen to us; the worst thing is not to believe in anything worth suffering for.”
Whether or not you or someone you know has a chronic illness: do you believe in something worth suffering for? What is your source of strength and hope that keeps you going, no matter how hard life can get?
May all of us come to know that, personally, for ourselves, for the road ahead.
Mary Farrell Bednarowski, “Personalizing Religious Traditions Can Help the Healing,” available http://www.parkridgecenter.org/Page89.html
Arthur Caplan, “The Moral Tragedy of Chronic Illness,” available http://www.pbs.org/inthebalance/archives/whocares/the_challenge/arthur_caplan.html
Fred Friendly, Who Cares: Chronic Illness in America, website available http://www.pbs.org/inthebalance/archives/whocares/index.html
Carolyn Magura, “Disability, Chronic Illness, and Spirituality,” available http://www.canadianmobilityhelp.com/articles/disability-spirtualitity.html
Craig Maupin, “Spiritual Value and Chronic Illness,” available http://www.cfidsreport.com/Articles/Spirituality/Spiritual-1.htm
Sefra Kobrin Pitzele, We Are Not Alone: Learning to Live with Chronic Illness (New York: Workman Publishing, 1986). See http://www.amazon.com/We-Are-Not-Alone-Learning/dp/0894801392
Rachel Naomi Remen, “Wholeness,” interview in
Bill Moyer’s Healing and the Mind (New York: Doubleday), 1993.