When the Body Says No: The Cost of Hidden Stress (21 page)

Jill, a Chicago filmmaker diagnosed with advanced ovarian cancer, admits to being a perfectionist. A friend of hers told me that she had felt concern during the year prior to the diagnosis as she watched Jill endure a stressful experience. “I felt at the time that this is going to be more than psychologically damaging,” the friend said.

“About three years ago Jill got into a collaboration on a video. The production company didn’t do a great job. It became a horrendous
nightmare for her, because her expectations were that she had to come through on a project. Once she’s agreed to it, it has to be very high quality. She spent three or five times as much time as she was compensated for. That was, I believe, a big trigger for Jill’s body to say, I can’t stand this.”

My interview with Jill herself was illuminating for its combination of disarming honesty and psychological denial. Jill told revealing stories of stresses in her relationships with her parents and her spouse, without for a moment accepting that these may have contributed to the onset of her illness. She is fifty, highly articulate, with a tendency to go into a labyrinth of details on every topic. I sensed that was her way of keeping anxiety at bay. She appeared uncomfortable with even brief silences in the conversation. At our first meeting, Jill was still wearing a wig, having lost her hair because of chemotherapy.

She had adopted a mothering role in her marriage. When her husband, Chris, suffered an acute but debilitating illness, she cared for him with maternal concern and devotion, calling the doctors, nursing him at nights, ensuring that he was well looked after while she was at work. All this time she was preparing a presentation she was about to give at a national conference and conducted an evening study group for aspiring filmmakers. She led such a group the night before she left for the conference, packing at two in the morning and catching an early flight.

It was shortly after her stint of caring for her husband that she experienced the first symptoms of ovarian cancer. The contrast in caretaking by husband and wife was dramatic. Chris made no medical inquiries on her behalf over several months, seemingly oblivious to her pain and weight loss, despite that fact that she was “living on Advils.” “Strangers in elevators would ask me if I was well,” she says. As often happens with ovarian cancer, doctors took several months to arrive at the diagnosis.

The first thing Jill said when informed she had ovarian cancer was “‘My poor husband and my poor mother.’ I am a pillar of strength for them. I felt sorry for them, because they would lose that support.”

The gynecological oncologist explained to the couple that the prognosis for survival past five years was poor, given the stage at which Jill’s disease had been diagnosed. Chris was in denial. “He didn’t seem to have heard that,” Jill says. “I needed to talk about what I just been told, but in the car on the way home Chris just kept saying how we’re
going to fight and beat this. He actually didn’t remember what the specialist had said about the prognosis, not even afterwards. It completely bypassed him.”

As she faced her surgery, Jill had to deal with her mother’s decision to stay with her. “She was not going to come. She’s really used to being the centre of attention, and she doesn’t like flying. But everyone was saying to her, ‘Your daughter is going into hospital, and you’re not going to be there?’ So in response to that she had to be a mother and really come.”

“If that’s how you saw it, how did you feel about her coming?”

“At the very beginning I was happy that she wasn’t coming. I didn’t want her. I knew she was using me to be a good mother, but I’ve always taken care of my mother since my dad died—he had asked me to.”

“My guess is that you’ve taken care of her since you were born.”

“Okay, since I was born. My dad used to say to me, you know, leave her be. He was so very protective, exasperated with her, but he really loved her in some twisted way. He also had a great understanding of her limitations, and at his own expense he accommodated her as much as he could.

“Once my father picked me up at the airport as I came back from a major work trip to Southeast Asia. I was exhausted. My mother was a teacher, and Dad wanted to drive me to her school. ‘So you can say hello to your mom—she’s waiting there with all her pupils,’ he said. I said, ‘No Dad, I don’t want to go. I’m very tired. I’ve had an emotionally draining trip. I just want to go and be by myself.’ ‘Do this for your mom. You know she is really looking forward to this.’ He actually drove me there, and she was waiting with all the kids, and he made me put this rice paddy hat on that I’d bought so that I would entertain them. She was doted on like this all her life—and he knew that she needed to be honoured that way. She could show the kids her daughter had been away, and now she was back to see her. I played that role to please my dad, and it happened all the time.”

“Wouldn’t you encourage your children to assert themselves, not be drawn into taking care of somebody in that sense? Jill, you’ve got this serious disease, this major operation coming up, and your mother not only comes, she stays with you a whole month.”

“And she’s very demanding. For a whole month I was catering to her. You know, it’s true, I’m very dutiful, I am really very dutiful. I take
care of her. I went through it and talked about it with my friends, and a lot of them said not to let her come.

“It went through my head many times, If one of my kids were having surgery, and if they didn’t want me to come, I would accept it. However, I would hope that they would feel comfortable that I would be there. With my mother, if I was going to feel guilty and miserable because I didn’t provide for her also, that would have been a greater stress for me.”

Jill’s recollection of her childhood is not that she was a compliant child but that she was rebellious. “I wasn’t such a good kid as an adolescent. My father said that he would never wish that I would have a kid like me. I was quite a handful for them. As a teenager, I was considered very difficult. I did well at university, but I just didn’t like school. Then I got married—somebody professional. So I turned out good for my parents, after all.”

Jill’s mother died last year, since our interview. Her daughter felt a need to look after her even in death. The obituary she wrote eulogized her mother for having travelled a long distance to be with her and to nurse her after her surgery for ovarian cancer.

  F
OURTEEN YEARS AGO
, when she was thirty-nine, Martha travelled from Phoenix, Arizona, to the Mayo Clinic in Rochester, Minnesota, for a second opinion. Her bowel specialist had recommended that the entire large intestine be removed as the only way of controlling her Crohn’s disease. “If they said I needed surgery, I was ready to accept that,” she says, “but I was reluctant.”

For more than a decade and a half, Martha suffered episodes of bleeding from the gut, anemia, fevers, fatigue and abdominal pain. The symptoms began shortly after the birth of her third child. “It was a very busy time in my life, with a lot of confusion. Jerry, my husband, was in his last year of dental school in Montana. I was twenty-three with three kids.” The children were four, two and the baby was only five months old. The family had no income yet, so Martha was doing babysitting and whatever other work she could get. After Jerry’s graduation, the couple moved to Phoenix, where he set up his dental practice.

“I just wasn’t feeling well. Third baby, very tired and drained emotionally. I was completely alone in Phoenix. I had never wanted to come here in the first place. I wanted to live in Montana. And the truth is, he had an affair one night—that’s what pushed me over the top. I began to have abdominal pains.”

A few months later, the couple returned to Montana for Jerry’s graduation ceremony. “By then I was hemorrhaging from the bowel.
I was hospitalized immediately because my mother-in-law worked in a medical clinic and she saw I wasn’t well. That was when I was diagnosed with Crohn’s disease.”

Crohn’s is one of the two major forms of inflammatory bowel disease, or IBD. Ulcerative colitis is the other. Both are characterized by inflammation of the bowel but in different patterns. In ulcerative colitis, the more common of the two, the inflammation begins in the rectum and spreads upward. The entire colon may become involved. The inflammation is continuous but confines itself to the mucosa, the superficial layer that lines the gut.

In Crohn’s disease, the inflammation extends through the entire bowel wall. Most often the ileum, which is the third and final part of the small intestine, and the colon are affected, but Crohn’s may appear in any part of the digestive tract, from esophagus to large intestine. Unlike ulcerative colitis, Crohn’s will skip areas of the alimentary canal so that normal tissue alternates with diseased segments. IBD may be associated with inflammation in the joints, the eyes and the skin.

The symptoms of IBD depend on the site of involvement. Diarrhea is common in both diseases, along with abdominal pain. Patients may need to defecate many times during the day or even find themselves incontinent. When the colon is affected, there will be bloody stools or, as in Martha’s case, frank hemorrhaging. Especially with Crohn’s, patients may experience fever and weight loss. There may be other complications, such as fistulas created by inflammation—tunnels from the intestines to other organs such as the skin or, say, the vagina.

IBD is usually a disease of young people. Although it may occur at any age, most commonly onset happens between the years from fifteen to thirty-five.

Martha’s symptoms settled quickly in hospital with a course of cortisone. Soon after being discharged she bled again and had to be readmitted. “I got a blood transfusion, but when it was time for discharge, I hemorrhaged again. That time I went into shock. I was in intensive care. Then I got back out and tried to pull my life together.

“I realized that I was probably not wanting to come back to the marriage and the home. I couldn’t figure out why else I kept hemorrhaging whenever it was time for me to leave the hospital. Why didn’t I just leave my husband? I think I must have just been incredibly young.
The truth is that when I did come home, he ended up having another affair. I said, ‘I’m going. This is it.’ I should have left then, but I stayed.

“The next three or four years I was a sick puppy. I was tired a lot. My older one, who would then have been five, was having to help with the other two because I just wanted to sleep most of the time.”

“What was your husband doing all the while? What was your relationship like?”

“I’ve always compromised for him. He has been an angry person, so I was intimidated by him. He physically intimidated me. He never hit me, but he yelled and threatened and was very aggressive. He was also drinking a lot. One time he really humbled me in front of the kids, which was not good at all. He stood right in my face and yelled at me.

“I was a silent sufferer, and he is an incredible manipulator. Everything was always turned on me. I was always made to feel insecure. At times I couldn’t believe how he could twist things to have it be all my fault.”

“Did anyone suggest to you that there might be any connection between your stresses and your disease?”

“No. No medical person ever suggested that. But at the Mayo they had an interesting questionnaire. They asked, ‘Has anything significant happened/or is happening in this past year?’ I remember reading it and thinking, Oh gee, for the first time somebody’s actually caring about what’s going on in my life. It was significant for me.”

Medical science considers IBD to be “idiopathic,” of unknown causation. Heredity plays a role, but not a major one. About 10 to 15 per cent of patients have a family history of IBD. The risk is estimated to be from 2 to 10 per cent if a first-degree relative has been diagnosed.
¹
Patients often intuitively feel there is a connection between their IBD and life stresses, as Martha did with her hemorrhaging. In fact, research shows that “most people with inflammatory bowel disease believe that stress is a major contributor to illness.”
²

For Martha, the immediate stressor in the year before her visit to the Mayo had been the departure of her two teenage daughters, who both left home to attend universities in California. She had relied on them for emotional support. Her husband continued to be emotionally abusive, and by then he had exchanged his drinking for a gambling habit. Once her daughters were gone, surgery became unavoidable. She
realized later, through counselling, how emotionally underdeveloped and dependent she had been.

Tim, fifty-two, with ulcerative colitis, acknowledges his obsessive need to please. “I spend a lot of time trying to appease and trying to impress others rather than looking inwardly.” He has two older brothers. Neither has settled down to a recognized career. One of them got married only recently, in his fifties. His mother has been critical of his siblings, judgment Tim has been anxious to avoid.

“I feel like I’m the perfect son, who got married, has a house with a picket fence and three kids. Maybe in some way I’ve been trying to please my mom without really knowing it.” A 1955 survey of ulcerative colitis patients found that “colitis patients’ mothers were controlling and had a propensity to assume the role of martyr.”
³
No one sets out consciously to be a martyr to her children or to be controlling. A less judgmental way to put this would be that the child perceived himself to be responsible for his mother’s emotional suffering.

Tim is a stickler for detail. “He overorganizes everything,” his wife, Nancy, says. “He drives me crazy always asking me, ‘When is your timeline for this? Don’t forget to do this.’” The 1955 study, which looked at over seven hundred people with ulcerative colitis, concluded that a high proportion of these patients “had obsessive-compulsive character traits, which included neatness, punctuality, and conscientiousness. Along with these character traits, guarding of affectivity [emotional expression], over-intellectualization, rigid attitudes toward morality and standards of behaviour…. Similar personality traits have also been used to describe patients with Crohn’s.”
⁴