The Health Secret We’re Afraid to Reveal
Each of these women has an illnesslupus, breast cancer, bipolar disordershe wouldnt admit to anyone … until now.
“She has cancer,” I told my 14-year-old, who wondered why one of her teachers had not returned to work for the new school year.
“Will she be OK?” she asked.
“Well, no,” I said. “She may not live much longer.” Id just learned that the teacher had been sick for a year and had kept her condition from everyone but a few colleagues. This sudden and devastating news, which spread quickly through the schools network of mothers and was followed up in a poignant letter from the school soon thereafter, had hit like an emotional atomic blast. No one knew. No one even suspected.
“I understand shes sick,” my daughter said, “but why would she want to hide it?”
Why, indeed? Arent we the gender that talks more and listens better? We usually happily share information, even private information. Why, then, do some women keep mum when illness enters their lives? Here, secret keepers reveal the very personal reasons they hid an illness or conditionand what inspired them to finally spill the beans. And one woman explains why shes still not telling.
Next page: The "don't call me sick" secret
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The “dont call me sick” secret
Breast cancer, a belligerent and unexpected houseguest, arrives on the doorsteps of more than 175,000 American womens lives every year. But when the threshold belongs to a woman who has made healthy living the cornerstone of her life, that knock on the door may also bring shameand secrecy.
“I was a real health nut,” says Katreese Barnes, a musician in New York City. “I was judgmental of people who ate foods that werent organic or drank water that wasnt filtered. I felt they were living their lives out of balance.”
When a routine physical exam in 2000 turned up a problem, Barnes was surprised. “The doctor said, ‘Youve got to get a mammogram today,” she remembers. “The radiologist was sad-faced.”
Barnes had ductal breast cancer. “Weeks later, I had a biopsy,” she says. “And then I had to have a lumpectomy.”
At the border crossing from healthy to ill, she was horrified at the irony. “Because Id been so preachy prior to finding out I had cancer, this, for me, was a walk of shame,” Barnes says. She kept her diagnosis secret from everyone except her parents and brother. Anda mere four days after her lumpectomyshe showed up for the new gig shed landed just before her diagnosis: pianist for the famed on-set band of Saturday Night Live. “I wanted to function as a well person,” she says. “I wanted to work through it. And I did, even when the pain from the lumpectomy lasted for months.” In fact, at holiday time, a classic SNL arrangement of “Jingle Bell Rock” required Barnes to hammer a chord over and over at a rapid-fire pace. But she never let a soul know how much it hurt, much less why it hurt.
Barness cancer returned a year later. “I thought, Im going to work. Im not going to be one of those musicians with a disease who needs fund-raisers. There were times, even during the show, when something would trigger a nerve and make me want to cry. But I hadnt told anyone I had cancer, so I had to keep shifting the focus.”
She tried several different treatment regimens and had regular mammograms until, finally, her readings were clear. Then Barnes slowly let her bandmates know about her illness. Now the pianist is the musical director at SNL, and shes not above holding her now-public health struggles over her fellow musicians heads. “People show up late to work because they have the sniffles,” Barnes says, laughing, “and I say, ‘Hey, Ive never been late. And I had cancer.”
Next page: The "you won't like me anymore" secret
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The “you wont like me anymore” secret
When Susan Crickman started feeling under the weather in 2001, she watched her husband respond with frustration and impatience. That scared her even more than her extreme fatigue and joint pain. Formerly a divorcee with two young children, Crickman was newly remarried to a prominent lawyer in Fredericksburg,
Virginia, and she wanted everything to be perfect. Being sick for more than a year and eventually being diagnosed with lupus (a painful and fatiguing autoimmune disease that affects as many as 1.8 million women) wasnt part of the plan.
“Even after the diagnosis, I never even said the word lupus to him,” she remembers. “We were an up-and-coming couple. Id built the office for his law practice. I was afraid hed think, I married this beautiful wife. We have this great life. Now she has lupus. I was afraid hed leave me.”
In fact, Crickman went into a deep depression the day after she was diagnosed. “I hid in my bedroom for a week,” she says. “We had a gun collection that my husband had inherited from his father. And I told him to get all the guns out of the house. I said it was because the kids were getting older. But the real story is that after my diagnosis I was completely suicidal.”
Meanwhile, Crickman also kept her diagnosis from her children, afraid theyd equate a serious medical condition with that of their grandfather whod recently died. “I didnt want my kids to be worried all the time,” she says. But they were. Her 10-year-old son “would sneak into the room just to make sure I was breathing,” she says.
Then she and her husband started fighting constantly. “I was tired of him screaming at me about why I wasnt doing the things I used to do. In 2005, I told him to get out. He went and lived with his mother for three weeks."
Soon after, Crickman told her husband and children she had lupus. And after a close friend died, the couple decided to reconcile. Life wasnt an instant bed of roses, but everyone has learned to cope“were doing it together,” she says.
Next page: The "it'll hurt my career" secret
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The “itll hurt my career” secret
Lupuss sudden flare-ups can make the simplest tasks herculean and render many women unable to workand afraid to tell employers for fear theyll lose crucial health insurance. “A company will find any way to get rid of you,” says Mary Anderson (not her real name), 27, who was diagnosed with lupus a year ago.
Andersons job as a manager for a laboratory in Las Vegas doesnt place many physical stresses on her, but there are days she knows her lupus compromises her job performance. Her position requires traveling, and her meds sometimes make driving difficult, even dangerous. And, on top of bone-weary fatigue, Anderson struggles to focus amid the lupus fog. “Its quite overcoming,” she says. “Ive been in the middle of doing something and completely forgotten what I was supposed to do. It doesnt happen often, but it happens enough that I wonder if I should be on disability.”
For now, Anderson is keeping her job, holding off fears that shell suddenly be viewed as unworthy of employment. “People start to feel sorry for you, feel you cant do this or that,” she says. “Because Im in the beginning of my career, I dont want the stigma.”
Although she attends a lupus support group, Anderson guards her secret on the job. “I regret that people cant understand what Im going through,” she says. “I feel plowed under. But news travels, and I cant take the risk of someone who may have power or influence over my career finding out. I have to work. I have to keep my insurance.”
And yet. Ruth, 33, another lupus patient whod kept her diagnosis secret, found herself suddenly stepping into the light of disclosurewith profoundly positive results. During a remission, she got a human resources position at a New York City–based nonprofit agency, and her first flare-up created suspicion and concern among her supervisors and co-workers. “They said, ‘What happened to you? When we interviewed you, you were vivacious. Now you sound groggy. Are you stressed out?” Ruth* maintained she was fine. “I should have said, ‘No, Im not fine,” she says, “but I thought that would make them look for something and maybe even fire me.”
Ruth weathered a hospitalization for another flare-up, but then her world shifted. A year later a new employee in another department suggested that the company participate in a lupus walk. The reason? She had lupus. “My mouth fell open,” Ruth remembers. “I thought, Maybe I should let her know I have lupus, too.” But she kept quiet until a company luncheon for the walkathon. “At lunch, we were going around the room talking about why we were supporting the walk. When it was my turn, I said, ‘I have lupus. The words were flying out of my mouth.” Ruths unexpected outing of her deepest secret landed on soft, supportive ground. “Everyone was so understanding, so compassionate,” she remembers.
Newly energized, Ruth networked to get better medical care. She also began reading up on her disease, and in March she participated in Lupus Advocacy Day in Washington, D.C. Ruth credits the arrival of that co-worker as a life-changing moment: “She said to me, ‘Ruth, if youre hiding it, only you know how much youve suffered. You can help someone else by telling your story.”
*Ruth's last name has been withheld at her request. She is now looking for a new job and is concerned that her condition will scare off prospective employers. Her concern is a vivid reminder of the stigmatizing effect that disease can have.
Next page: The "don't judge me" secret
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The “dont judge me” secret
Growing up in a small Connecticut town, Elizabeth Wageley was hospitalized multiple times for depression, panic attacks, and self-injury. Finally, at age 14, she received a diagnosis of bipolar disorder. She told one teacher. No one else. “People judge,” she says. “Everyone knows everyone else in my town, and word spreads so fast. I wanted to be a normal girl.”
When Wageley went off to college, she finally saw her opportunity to open up about her illness. With classmates coming from all over, the provincial scrutiny shed felt faded. “I decided in advance,” she says. “I told one of my friends.”
At work, Wagely made the same decision. “I told one woman, and she and I ended up having a two-hour conversation about our families, about mental illness. I was blown away that I could talk about this. I feel more comfortable now. I realize that if people judge me about this, then they have a problem.”
Now 18 years old, the college student still treads cautiously. Her longtime boyfriend knows. Her friends know. But when she looks into the future, privacy still figures into her landscape. “It boils down to who Im dealing with,” she says. “If theyre mean and ignorant, I dont want to tell them. If theyre a kind, understanding person, its probably a go.”
Cindy Chandler, 50, has had trouble finding kind, understanding people with whom she wants share her complex medical history. Plus, like many women, shed been raised not to burden others with bad news. But it was hard to hide because her chronic Lyme disease affected her in lots of ways, including causing painful, lesion-covered skin.
While working for a moving company near her hometown of Smyrna, Georgia, she was asked to leave the home of a client who felt nervous that Chandlers skin would somehow affect the materials she was helping to pack. On another job, co-workers speculated that her skin lesions were AIDS. “I knew people were talking about me at the water cooler,” she says, “but I didnt want to go through the whole story of Lyme disease and what it is and does.”
Eventually, after more than six months of dating, Chandler told the man who is now her fiance. And her “bad news” didnt burden him one bit. He rallied in ways she had never expected, offering both emotional to financial support. One day of blood tests, she says, can run as much as $2,400. “He takes care of me,” she says. “Hes solid gold.”