In this chapter I use case histories to discuss the first three strategies that help people endure chronic affliction. They are:
1. Cultivate your social network.
2. Keep your priorities straight.
3. Don't dwell on your illness.
First, by way of introduction, let me tell you about a cardiologist, whom I will call Arvind Patel, respecting his request for anonymity. Arvind Patel was born in Punjab, India. He immigrated to the United States at age twenty-four and is a practicing Hindu. He and his wife worship in a Hindu temple in their city. (Hinduism is the fifth major religion in the United States, after Christianity, Judaism, Islam, and Buddhism in that order.)
For the past twelve years Dr. Patel has been living with metastatic cancer. When he was first diagnosed at age thirty-eight, he was thought to have a life expectancy of six months. The cancer originated just below his stomach. It metastasized to his liver. Arvind has had many operations and radiation. Usually he has discomfort, a sensation that is not quite strong enough to call pain. He's been taking the medicine interferon daily for a decade. Interferon produces flulike side effects, which Arvind has endured during most of this time-fever, joint aches, muscle aches, and fatigue-and there have been many complications of the cancer, which I won't discuss.
Despite the cancer, Arvind is quietly exuberant about life. This is possible because he does three things. First, he has cultivated his social network (strategy one). He has an adoring wife who sticks with him through thick and thin. As a skilled internist, his wife has been the quarterback in charge of Arvind's treatment team. Other members of his social network-his children, family, friends, and professional colleagues-have rallied around him during the crisis points of this disease. Arvind used to love to play tennis. When that became impossible, he took up the card game bridge, which allowed him to interact with others.
Second, Arvind keeps his priorities straight (strategy two). The needs of patients are his highest priority. His patients help him a lot. For example, if a man is having a heart attack at 3 A.M., with crushing chest pain, Arvind will perform an angiogram, including angioplasty and placement of a stent. As a result, the patient feels better and is profoundly grateful. "This experience gives me the biggest high," says Arvind. "It makes me feel great!"
Third, Arvind doesn't dwell on his disease (strategy three). Even when he is uncomfortable, he doesn't ruminate about the cancer nor its prognosis. He works full time as a cardiologist. Work is a blessing, allowing him to forget the discomfort and focus instead on the needs of his patients. A metastasis to his spine caused considerable pain, and a doctor at Sloan Kettering proposed to put Arvind permanently on narcotics. Arvind refused, saying, "Would you want to undergo cardiac catheterization knowing your doctor was taking narcotics?" Instead a neurosurgeon removed the metastasis and local radiation eliminated the pain without narcotics.
Someone who hasn't seen Arvind in years will say, "Why, you look fabulous!" This annoys him. The unstated expectation is that Arvind would have deteriorated because of the cancer. He doesn't want to be identified as a man with cancer. He wants to be known for who he is, an accomplished cardiologist. He has to remind himself that people who say, "You look fabulous," are well meaning even though their comments are stupid. When you meet Arvind, you don't meet "a case of cancer," because Arvind doesn't dwell on his disease, nor does he identify himself with it.
In summary, Arvind lives with uncertainty about his future. He has been able to cope, even though he knows that someday the disease could get worse and he might have to stop working. For a decade he has had flu symptoms, discomfort, and occasional pain. There have been multiple surgeries and complications, but he doesn't allow what he considers minor problems to ruin his life. For him being alive is delicious, and with the coping strategies he is able to find pleasure in life.
Strategy One: Cultivate Your Social Network
When I set up the Crisis Service at Waterbury Hospital fifteen years ago, Sue Reilly worked for me. Since then she has married Steve Sowle, moved to Evanston, Illinois, and earned a master of social work (MSW) degree. They have two children, Andrew and Zachary, and the younger child, Zachary, has multiple birth defects.
I asked Sue if, given a choice, she would sign up to go through again what she has gone through with Zachary.
"In a heartbeat," she replied.
Zachary's birth defects go by the name CHARGE syndrome. CHARGE is an acronym for:
Coloboma (a defect in the iris and retina)
Atresia (absence) of some of the nasal passages
Retardation of development
Zach, at four and one-half years old, is only now being toilet trained. He is weaker than other kids, and it's still unclear what his cognitive ability will be. For example, his parents don't know if he will be able to go to college or even work at a McDonald's flipping hamburgers. After many operations, his clubfeet have been repaired. During most of his life, Zach has had fifteen different doctors specializing in the care of each of his many problems. Although Zach now eats solid food, for the first four years of his life, he had zero interest in food. People with CHARGE syndrome often have trouble eating, but most of them do eventually learn to eat by mouth. The fact that Zach has started eating is one of the reasons that his geneticist believes Zach has CHARGE syndrome.
Although her husband, Steve, is a born optimist, Sue is not. Her natural disposition tends to be cynical and pessimistic. Thus it is surprising to hear her say she'd go through what she's endured all over again. Her upbeat attitude cannot be attributed to faith. She and Steve are dyed-in-the-wool atheists.
"Our view is that this stuff happens," Sue says, "and we simply have to blunder through it. Actually, I think it is easier to be an atheist when a child is born with defects. We don't ask ourselves why God did this or why God let this happen. We simply accept it as meaningless. That allows us to avoid struggling with the meaning so we can focus on the practical problem of living in the present with Zach's daily challenges.
"Lots of people said they were praying for us," Sue continues. "That was nice, I guess. When people would say to us, 'Everything happens for a reason,' I would wonder, Exactly what kind of reason could there possibly be for Zach's birth defects? My view is that CHARGE syndrome probably occurs because of a chromosome deletion that takes place at random."
Sue hasn't always felt positive about their situation. At first, Zach's condition appeared to be a disaster. Sue cried through the entire first year of his life. She often wondered if she were capable of being the mother of a child with so many problems.
Only slowly did the blessings become evident. Over the last five years, all six of Sue's siblings have flown in to spend time with her. Previously she would have said that her family of origin was pleasant but distant. Now she has a warm and intimate relationship with all her brothers and sisters. They have become Sue's safety net.
Zach brought other blessings. Steve was on the faculty of the Chicago Kent College of Law. He had to drop out of the tenure track to have time for the crises at home. He now is assistant dean and teaches at the same college, no longer under pressure to publish. The assistant dean role fits him better than the tenure track. Had it not been for Zach, Steve would never have discovered his true calling.
Zachary is gregarious. Recently he walked into a waiting room full of strangers, walked up to a woman he didn't know, and asked, "What did you have for lunch today?" He then engaged her in a twenty-minute conversation. He is eager to please, a happy child.
Some of the reason Zach is so popular is that nearly everyone has known him for years in the circles he travels, which is usually the waiting rooms of doctors' offices. People remember this child who was so often in a cast and had a feeding tube up his nose. They are delighted to see that he is now doing better. By people I mean adults. Zach has spent his life relating to adults-physical, speech, occupational, and cognitive therapists; doctors; nurses; and medical technicians. With one exception, he doesn't interact with other kids. The exception is Andrew, his older brother, whom Zachary adores and with whom he shares a room. There is laughter coming down the stairs when the two of them are upstairs together.
Ironically, some of the struggle of the first year for Sue arose because Zach was so loveable. Originally his parents expected him to die. They were afraid to allow themselves to fall in love with him. There was a question of leukemia, but it turned out to be nothing. Eventually Sue and Steve let down their guard and were charmed by Zach's magnetic personality.
Things have improved so much for Zach that initially Sue told me that she would be fraudulent if she were interviewed for my book, because, "Zach is fine. He has recovered and everything is fine now. He's just a normal kid."
Can There Be a Reason?
Sue would sign up to go through it all again "in a heartbeat," because this incredible four-and-a-half-year experience has been "a lovely one," she writes in an email. The decisive issue was that Sue discovered a safety net of people who supported her-husband, brothers, sisters, and mother-in-law. When she first learned that her infant had problems, she did not anticipate that the experience could be so rewarding.
Many sick people and their caregivers in this book are cheerful because family and friends support them. A social support network is of vital importance in dealing with stress. It is so powerful that those who are sick but have friends may not even feel stressed, as I said in the introduction.
I want to comment on something Sue said: "When people would say to us, 'Everything happens for a reason,' I would wonder, Exactly what kind of reason could there possibly be for Zach's birth defects?" Should we view Zachary's birth defects as meaningless, a development that has no reason? For me that view is difficult to reconcile with the Bible. Jesus says God micromanages the universe so that not a sparrow dies without God's permission and even the hairs on our head are numbered (Matt. 10:29-30; Luke 12:6-7). How then can we understand evil, such as CHARGE syndrome?
The best answer comes from Augustine of Hippo, who explains the existence of evil as follows: "God judged it better to bring good out of evil than not to permit any evil to exist."1 The reason for an illness is often something that lies in the future, rather than something that lies in the past, as we will discuss in chapter 5.
The Importance of the Safety Net
I asked Sue what it would have been like for her if she had not had a network of people to support her. "Oh God," she replied, "that's just a terrible and frightening thought. It would have been hell! Steve and his mom just took over and raised my older son, Andrew, who was six when Zach was born. Steve's mother was here all the time. She was wonderful! There was a constant stream of people coming to visit us and phone calls every night. It made all the difference. This was not a solo thing. Because of the people around me, I could cry and complain and go back to the hospital again.
"For example," Sue continued, "when Zach was five days old, a decision was made to move him from the local hospital to the Children's Hospital, because he was doing poorly. I came home for dinner before going with him to the Children's Hospital. I needed to grab a handful of things, pack a bag. We sat down for dinner, and I just started to cry uncontrollably. I cried for a full hour. Andrew and Steve just held me and hugged me for that hour. 'Mom needs help,' Andrew said. They were just there for me. At the end of an hour I was strong enough to get up from the dinner table, pack, and leave."
"Have you ever been to a circus and seen the trapeze artists with a safety net under them in case they fall?" I asked.
"Yes!" Sue replied. "Yes, that is exactly it!"
Sue used the first of the twenty strategies-cultivate your social network-that I gave in the introduction, the strategies people use to live well despite chronic illness.
Strategy Two: Keep Your Priorities Straight
Suzanne Luchs, of Milford, Connecticut, and a new member of my church, has lived with pain for many years from fibromyalgia, migraines, and endometriosis. To understand Suzanne's decision to remain upbeat, you have to start with Suzanne as a mother.
Throughout her life she has loved children, any and all children. There was nothing she wanted more in life than to be a mother. So when she got married at age twenty-four, it came as a jolt to discover that she couldn't get pregnant. The decade before her marriage, she had had premenstrual and menstrual pain. Like many women Suzanne had been counseled to ignore these pains. In retrospect, that was bad advice. The pain was evidence of undiagnosed endometriosis, which scarred her fallopian tubes, leading to infertility. The problem could not be fixed despite several surgeries.
In her effort to get pregnant, Suzanne underwent every possible procedure short of retrieving her eggs, fertilizing them in vitro, and implanting the embryos in her uterus. That procedure bothered her ethically. She worried, "What happens to the embryos that are not implanted?"
"There's nothing I ever wanted more than to be a mother," Suzanne says. "By age thirty-seven I was getting the panicky feeling that it would never happen."
Since all else had failed, Suzanne began to explore adoption. Kurt, her husband, was open to, but not enthusiastic about, the idea. Suzanne heard of someone who adopted a child from Romania. "What about Romania?" she asked Kurt.
"No, not right now," he had replied. Kurt vetoed adoption of children from a variety of countries. It turned out that he had the face of an Asian baby in his imagination when he thought of an adopted baby, and the mismatch between his imagination and Suzanne's proposal that they adopt was, with one exception, the source of his veto.
The exception was that one day Suzanne asked, "What about China?"
On that day Kurt envisioned an Asian baby and it seemed right. So he said yes. Many babies are put up for adoption in China each year. Suzanne applied to adopt one. Eventually she and Kurt became the parents of Nora, who is six years old as I write.
As the time came to fly to China to get Nora, Suzanne figured she had to whip herself into better physical shape. She had been physically inactive but was about to begin carrying a nineteen-pound, one-year-old infant. So she decided she needed a crash course at a gym. Without consulting anyone, Suzanne began lifting weights and doing aerobic exercises ninety minutes a day, five days a week.
Her body rebelled. She would drive home from the gym trembling. There was overwhelming exhaustion to the point that she feared falling asleep at the wheel. All sorts of bizarre sensations arose inside her body. She had numbness at the tips of her fingers, burning muscles, constant panic attacks, and weird emotional alarms. When she touched her muscles, they would shake out of control. Her skin began to tingle. She had shooting pains from her back and shoulders, down her arms. When she walked across the room, she felt that her feet might shatter, as if they were brittle, made of fragile ceramic. She had to urinate twenty times a night. She seemed to be disintegrating.
The doctors thought she must have multiple sclerosis (MS). Suzanne imagined her ability to be a mother going down the drain along with her health, destroyed by a progressive, wasting disease. Despair set it, which made the panic attacks worse. An MRI scan of her brain was the first piece of good news. It showed none of the white spots that one would expect from MS. Thus the diagnosis of this mysterious disease became more obscure, except to say that it probably was not MS.
Eventually it became clear that Suzanne had suffered an abrupt onset of fibromyalgia. The diagnosis simply put a name to that mysterious conundrum of problems Suzanne was experiencing. Fibromyalgia itself was a mystery, but the diagnosis meant that she did not have a progressive deteriorating condition like MS. Ironically the term fibromyalgia was good news to her, even though her symptoms continued to plague her.
Much of the time Suzanne felt as if her body were on fire, burning from the inside out. She couldn't get away from it. Unless she was distracted, she was tortured. This grew worse when she tried to sleep. On top of it all, she suffered migraine headaches. Once she had a migraine that lasted continuously for one year, despite all kinds of medications at high doses.
You might incorrectly expect that Suzanne would be crushed and bitter because of these afflictions. But you have to remember that she wanted to be a mother above all else. The fact that she did not have a progressive deteriorating condition was good news, because it meant that she could fly with Kurt to China to adopt Nora. Thus, despite her experience of fibromyalgia and migraine pain, she celebrated with relief, because she was able to become a mother. Motherhood trumped pain. It was a question of priorities. For Suzanne pain was present but less important.
"My experience," she says, "is that God is incredibly generous and good! I know this must sound silly, like Pollyanna. I was in extreme physical pain. Whereas the original Pollyanna was blindly and foolishly optimistic, I was optimistic for a reason, namely that I was going to be granted my deepest desire, namely a child. Five years later Kurt and I returned to China and came back with Jia."
Years after the onset of fibromyalgia, Suzanne found Dr. Russell Jaffe, who had a lab to test for delayed allergic reactions.2 Such allergic reactions would not be found by a normal lab because they are not immediate. In Suzanne's case, they came three days later. Tests showed that Suzanne had a delayed allergic reaction to wheat and gluten. When she stopped eating wheat and gluten, there was an 80 percent reduction in her migraines and fibromyalgia pain.
Suzanne's story demonstrates that suffering can be accepted providing it does not encroach on a person's top priority. Many sick people find that they need to ponder their priorities carefully and decide what is most important. One woman clung to life until her son graduated. Then she relaxed her grip on life and died. Once again, it was a matter of priorities.
For many people children are the top priority. For others it is God. When my wife Pat was alive and we had so many losses, I found Jesus's teachings helpful. Jesus said the top priority should be to love the Lord with all your heart, soul, and strength; and the second priority was to love your neighbor as yourself (Matt. 22:37-39; Mark 12:30-31; Luke 10:27). For many people, their nearest "neighbor" is their child.
Nurturing children and loving God are concerns that are especially helpful to sick people, because no illness can destroy a person's ability to focus on these priorities. Sickness might erode your finances, ruin your physique, end your sex life, and leave your career in shambles, but it cannot destroy your ability to love God, relate to your neighbor, and nurture your child. Keeping these priorities clearly in mind cultivates optimism, because the disease is not able to undermine your top priorities.
Strategy Three: Don't Dwell on Your Illness
The central image for this next case history is a brown paper bag. Perhaps it was used to bring apples or potatoes home from the supermarket. Someday a child may use it to make a mask, after he or she cuts holes for eyes and draws a nose and a mouth. But right now the bag is filled with air, nothing else. You might think that there is little of significance inside an empty brown paper bag, but you would be wrong.
The most jovial, good-natured physician I ever met is Sandy Hamill. His given name is Chalmers but everyone calls him Sandy. When I told him I was writing this book, he said, "I know who you should talk to, Mary _____." (At her request, I'm omitting her last name. That's because she is a member of Alcoholics Anonymous. The idea of using last names doesn't sit well with her.) "Despite terrible arthritis Mary has remained upbeat," Sandy told me, "and brought sunshine into the lives of everyone around her, including me." Sandy smiled, then gave one of his infectious chuckles.
I interviewed Mary at her home in Cheshire, Connecticut, when she was seventy-two years old. She was lying in bed on the first floor of her home, in what had once been a dining room. Mary was delighted to see me. Her family told me she had brightened up for days in anticipation of my visit. Evidently the idea of someone writing a book about "being sick well" appealed to her. It was not every day that a writer proposed that Mary's life was a success and should be recorded to inspire other people. She figured she was an expert on joyful living despite chronic illness.
Mary's hands are conspicuous-the first thing I notice. Her wrists are deformed and her fingers have a sideways S shape that contradicts my knowledge of anatomy. They are pink and soft when I shake them, but feel odd, like a floppy bag of skin with some disconnected bones tossed inside at random. They look useless, like the front fins of an ichthyosaur that might be helpful in the water but limp on land.
I was astonished to hear that Mary still wrote all the checks and kept the checkbook for the family. Two decades earlier, when her arthritis got so bad that she could no longer turn the keys to start her car, she took a fork from the kitchen, and inserted it through the middle of the key ring. That gave her a handle she could use to leverage the keys to start the car. When I interviewed her, Mary still drove, even though she could not grasp the wheel because her fingers wouldn't wrap around it. The car had fine-tuned power steering, so it turned with even the slightest pressure from the palm of her hand on the wheel, so she was able to drive safely.
Mary couldn't understand why I was so impressed with her hands. She had lived with these hands for decades and now took them to be "normal." It is astounding what people accept as normal!
Over the years, as her joints failed from rheumatoid arthritis, Dr. Richard Matza replaced many of the joints in her fingers, wrists, toes, ankles, and knees. There was a waxing and waning pain that was a permanent part of Mary's life. I couldn't get her to talk about the pain. She shrugged it off and changed the subject. I found an old newspaper report, which said that, prior to her surgeries, Mary had been in so much pain that she needed to use her teeth to pull the sheet up over her in bed.
Her sister, Rose Bradley, told me that Mary's pain once got so bad that she went to a hospital in Boston to have specialized surgery to replace the joint where her jaw hinged on her skull (the TMJ joint). But on admission to the hospital a chest X-ray detected a small lung cancer. Instead of jaw surgery, she had a lobe of her lung removed. That cured the cancer. She never did get her jaw joint replaced.
If this woman, who talks so much, has jaw pain, you could have fooled me. She shows no evidence of it. All I can see as I watch her jawbone is a love of conversation, an addiction to dialogue, and a deep-seated interest in people. She wants to know all about my children and me.
Mary's outlook on life is always cheerful. She starts the conversation by clarifying that her natural tendency to look on the bright side of life is a personality characteristic that she was born with. "It's chemical," she says. "I simply am that way because of my chemistry. I think your readers should know that I don't choose to be happy. It is simply my personality. And faith. It comes from my faith in God."
Mary was brought up Catholic but hasn't gone to church in years. She prays at home. No clergy, other than me, have visited her.
Three decades earlier, when she worked as a real estate agent, Mary got so crippled that she could no longer go into houses with her clients. She knew almost all the houses in Cheshire. Over the years she had sold many of them more than once and knew exactly what they looked like on the inside. So she would advise her clients what to look for, then send them in on their own while she waited in the car.
When Mary's arthritis became more severe and she became disabled, she refused to sit around and do nothing. She took up duplicate bridge, a competitive form of the card game. That took her to Canada and Atlanta for tournaments. Since she could no longer play golf, Mary was determined to play some sport, and competition bridge was her new passion. It was during Mary's bridge playing years that she got into heavy drinking. She went into rehab, then became a committed AA member.
Mary's other hobby is reading books. She devours both fiction and nonfiction.
"Mary is the smartest of the bunch of us," her sister Rose, who is a nun, tells me. "Mary has always been a go-getter. My brother has a Ph.D., but I always say that Mary has two Ph.D.s because of all the books she reads and how many things she is interested in.
"Mary stays in that bedroom a lot," Rose continues. "But she is always thinking about other people. She has large phone bills. She is constantly in touch with our family members and has a couple of women from AA for whom she is a sponsor and mentor.
"She refuses to talk about her disease," Rose says. "She will not tell you if she is in pain. When she has a bad day she doesn't phone anyone that day. She waits until she feels better before being in contact. At one family gathering she got a brown paper bag and said that anyone who mentioned anything about disease would have to put five dollars in the bag. With the threat of losing five bucks, everyone avoided talking about her illness. The conversation was about the exciting things that we were doing, about Peter and Meg, Mary's grandchildren, and about the exhilarating side of life. Mary loves that kind of talk. She thrives on it."
Mary's parents came to the United States in 1928. Her father, who was English, was a conscientious and moral man. He came first and found a job so he was able to support a wife before he went back two years later to fetch his Irish sweetheart. They settled in Nahant, a peninsula in the ocean in Lynn, north of Boston. Together they had five children, of whom Mary is the oldest. Her dad worked hard to support the family and was a nurturing parent.
"Mary takes after our father," says Rose. "She has his personality."
When you meet Mary, you do not meet a woman crushed by rheumatoid arthritis. If she hadn't talked about pain medicine with Elba Armstrong, a visiting nurse who popped in, I would never have known Mary was currently in pain. What eclipses the pain and disability is her delightful personality, apparently the chemistry she inherited or learned from her father. It just comes naturally to her, like water running downhill.
As I said good-bye to the family, Mary insisted that I take with me a poinsettia that was so huge I could barely see around the red petals to find my way out the front door. It was five days before Christmas.
Driving home, I thought about how often I have given advice to patients who suffer from chronic pain. "Eventually you have to make a decision," I tell my patients. "You have to decide what is going to be the focus of your life. If you talk all the time about your pain, then at first your friends will be sympathetic. But after a few months they won't know what to say. It becomes very old. Your friends may even avoid you, because they feel helpless and don't know what to do or say to help you. Many people with chronic pain have consciously decided not to talk about it, because the pain should not be the central issue in life. If all your conversations revolve around your suffering, then all your thoughts will revolve around it also. There are more important things in life. You don't want to miss out on the fullness of life simply because of pain."
That is solid advice. But few heed it. "I can't enjoy life until someone first gets rid of this pain," they tell me. I was delighted to meet Mary, because she lives happily by the counsel I've given to others.
Today other problems are looming for Mary. At age seventy-two she and her husband are considering selling their house and moving to an assisted-living facility. Even if she had never had arthritis, the problems of old age would now be on her agenda.
About two weeks after my second visit to Mary's home, she died. This took me by surprise. She had painful leg ulcers that she refused to talk about, but they were getting progressively worse. They proved fatal.
This reminded me of another woman named Elise Christianson, who went to my church. I interviewed Elise about her cancer. She minimized the whole thing and wanted to talk about serving the needs of others. Overall I found Elise so upbeat that she hoodwinked me into believing she didn't have much of a problem. It was manageable, not a burden. I decided not to include Elise in my book because I believed she wasn't dealing with a severe illness. Cancer was a relatively unimportant part of her life. I was astounded when she died two weeks later.
In the cases of both Elise and Mary I had failed to recognize the gravity of their illnesses because they didn't want to talk to me about their problems. In both cases it was only after they died that it dawned on me that they had been dealing with extreme situations. This illustrates a phenomenon I'll discuss at the end of this book: Sometimes people who have severe diseases or who are caring for someone with a severe chronic condition may appear to carry a light burden. Sue Sowle, who no longer considers herself burdened by Zach's many birth defects, is an example of this.
Mary's daughter, Carol Johnstone, told me that I had given Mary a great gift by listening to and writing down her story. Much of what I wrote was read at Mary's funeral.
As Normal as Possible
A patient of mine who has half a dozen chronic diseases and takes a dozen medicines, taught me a simple wisdom. "I get great pleasure out of going over to help with my grandchildren," she said. "I love seeing those little faces light up. It's surprising the things those kids say. The main thing is not to dwell on my troubles. I've got to live as normal a life as I can, accomplish as much as I can."
My mother is ninety years old and lives in an assisted-living facility near me. Every day she eats one meal in the common dining room with her friends. She says that her friends have all agreed on one ironclad rule to make meals pleasant: no discussion of medical problems at the dinner table. They are following the third strategy: Don't dwell on your illness.
Returning to the brown paper bag, Mary set it out prominently at a party and said that anyone who mentioned her illness would have to put five dollars in the bag. The emptiness of the bag at the end of the party signifies that the party was a success because Mary's disease was not discussed that evening.
It's interesting that the vast majority of the people I've interviewed for this book were happy to have me use their real names. They've all signed consent forms. They all want others to know that life is worth living, even with a chronic illness, but if we dwell on our problems, we'll be letting life pass us by.