Cancer
The sickness closet
One of the few things about illness people can control is whom to tell. That's why so many choose to keep it secret
(Credit: jcjgphotography and Monkey Business Images via Shutterstock) “My clients don’t know,” he told me. How could they? My neighbor Edward (some names and some identifying details have been changed) doesn’t look sick. In many ways, he isn’t. He’s a dapper, graying-at-the-temples man with two young children, a consulting business — and a recurring cancer for which he’s currently facing another round of treatments. It’s hard enough drumming up business in this economy, Edward says. If a potential client’s choice comes down to the healthy 30-year-old and the middle-aged man with a tumor, well, who would you choose? So he presses on in secret, cleverly arranging his business schedule around doctor visits and scans. He’s in the cancer closet.
One of the first things you have to deal with when faced with a life-altering illness is the decision about whom you’re going to tell, and how. When I learned I had malignant melanoma a year and a half ago, I told my editor before I told my family. (OK, I was on a deadline at the time.) Two days later, I told the whole world in a cover story for Salon. Two months ago, Boing Boing writer Xeni Jardin live tweeted her first mammogram – and her stunning diagnosis of breast cancer – to thousands of followers. For some of us, the diagnosis is where we find our voice. For others that kind of candor isn’t an option, for either professional or personal reasons.
While a friend was going through breast cancer treatment a few years ago, few in our circle knew that her mother was facing it at the same time. Five years later, Ginger, a figure skating coach, says that “I knew if I told anyone, my students would immediately start looking for another coach.” Instead, she covered up surgery with a story of a vacation to Maine, and sandwiched months of afternoon chemo and radiation treatments in between early morning and evening coaching sessions – and weekends traveling with her team. “It took everything to get through it,” she says now. “There were times I was so exhausted I couldn’t see straight. A couple of times I had to leave the ice because I was so sick.” But she says she’s never regretted her choice to keep silent. On the contrary, sticking to her rigorous work schedule and maintaining the demeanor of health was “what got me through.”
In the midst of a health crisis, the routines of a career — the sense of purpose and obligation it provides — can provide motivation and escape, something that isn’t easy to pull off when everybody’s concerned about your condition. Chris, a doctoral student and teacher at an academic medical center, didn’t enjoy having his students popping in to check on him during his treatment after a lung transplant for his cystic fibrosis. He’s since switched his care to a different facility. Now that he’s no longer on oxygen – “when you can’t conceal a blessed thing” — he’s also discreet with his peers. “I don’t want people deciding for me what I’m able to do,” he says. “I’m pretty good at determining that for myself.” He knows first- and secondhand how damaging honesty can be. When his wife asked for a scheduling change around one of his procedures, her boss relieved her of her duties, telling her that “he’d decided she wouldn’t be able to handle her responsibilities.” Pretty bold of him to come out and say it. The ease with which employers can “restructure” or blame a termination on popular culprits “inconsistency” or “absenteeism” make it easy to conceal how often people with chronic conditions and their caretakers lose their jobs over them — and even harder to determine how great a role illness plays in hiring practices.
Thanks to our often punitive American healthcare system, the consequences of illness can be severe far beyond the illness itself. Linda, who was diagnosed with MS four years ago, says her friends know her condition but she rigorously keeps it from her co-workers. “It’s bad enough to live with this disease not knowing how it will affect me,” she says, “but I am terrified that it could also affect my employment prospects.” For Linda, like far too many of us in this country, “the thought of losing my job and thus my healthcare is probably my biggest nightmare.” The Patient Protection and Affordable Care Act doesn’t take full effect for another two years, when no one will be able to be denied coverage based on preexisting conditions. Currently, you can apply for a “high risk pool” if you’ve been uninsured for six months. That’s a lifetime for a person with a serious illness, and for those of us on ongoing treatments and drugs, an unfathomable expense.
There are other reasons beyond the fear of career repercussions for keeping illness a secret. Nobody wants to be viewed as an invalid, or the one who might be circling the drain. And as cancer blogger Katherine, who has metastatic breast cancer, says, “It’s often easier not to challenge people’s assumptions than to explain.” Linda agrees that “I am perfectly capable of working and living a mostly normal life. However, there is still an antiquated view of MS in our society, and many people automatically assume that once you are diagnosed, your next step is a wheelchair.” And Ginger notes that even in this day and age, when you can’t swing a cat without hitting a LIVESTRONG bracelet, “There’s such a death sentence that people put on cancer.” The reality of illness is that there are plenty of days when you’re going through the rigors of treatment and its side effects, that you just don’t want to be the official spokesperson and explainer for This Is What My Disease Looks Like.
Just as difficult as being pitied, though, is the risk of finding yourself scorned for a condition beyond your control. Bette, who has autoimmune disorders, says, “I’m very Type A, never miss a day of work or class or a deadline, even if that means having to go throw up in the bathroom in between meetings with clients. There’s a perception that people with autoimmune issues are weak, fragile, or delicate, which are characteristics I really try to avoid, especially as a woman. There’s also a ton of stigma about fibromyalgia. Someone in my office the other day actually made a comment about how so many women say they have fibro for sympathy, which strengthened my resolve to keep my conditions to myself. ” And Cheryl, who was diagnosed with Type 1 diabetes after an initial misdiagnosis of Type 2, says, “Many people think I ate my way to diabetes, since I’m overweight, but that’s really not the case. I feel like my food choices are always silently (and sometimes not silently) judged. Look at the backlash that Paula Deen suffered. My reaction to that controversy? How awful that another person has to have this disease, no matter how she got it. It also feels somewhat embarrassing to be ‘sick’ — like a personal failure that one of my organs doesn’t work properly.” Now, however, she says, “I decided to become more public about it,” because among other things, “I’d rather do a shot in the middle of a crowded restaurant than in some dirty bathroom stall.”
As Katherine advises, “Every individual will have their own reaction and coping mechanism” for dealing with long-term conditions and sudden, sharp reversals of fortune. We all grapple with the physical changes and scheduling nightmares, with balancing our privacy and our secrecy, with the desire to share and the longing to be seen as our healthiest, strongest selves. We know that when we say we have cancer or we have diabetes, we have cystic fibrosis or lupus we’re HIV-positive, that you will not look at us or treat us the same way ever again. We just don’t know whether we’ll be met with compassion or a pink slip, with support or with judgment. There’s so much about illness we can’t control. That’s why we care so much about the one thing we always still have power over: the way we get to talk to you about it.
Mary Elizabeth Williams is a staff writer for Salon and the author of "Gimme Shelter: My Three Years Searching for the American Dream." Follow her on Twitter: @embeedub. More Mary Elizabeth Williams.
Kate Hudson’s cancer horror show
The bubbly actress's horrific movie, "A Little Bit of Heaven," turns terminal illness into a twee joke
Kate Hudson in "A Little Bit of Heaven" Ladies and gentlemen, we are gathered here today to mourn a sad loss. A luminous, unique presence who ably graced our lives and then was snuffed out far too early. A moment of silence, please, for Kate Hudson’s career.
It seems like only yesterday we were beguiled by the lively, bohemian Penny Lane in “Almost Famous.” But it’s been a painful decade since, as I know many of you gathered here can bear witness. Those of you who steadfastly supported Hudson over the years, who paid good money for “Bride Wars,” for “How to Lose a Guy in 10 Days,” for “Raising Helen,” “You Me & Dupree,” “Fool’s Gold,” “My Best Friend’s Girl,” “Alex and Emma,” “Le Divorce,” and “Something Borrowed” — you know what I’m talking about. You’re heroes for sticking around this long. That’s why it’s both tragic and necessary to come to the end of our journey now, to let her go off to a better place. The D-list. It’s called “A Little Bit of Heaven.”
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Mary Elizabeth Williams is a staff writer for Salon and the author of "Gimme Shelter: My Three Years Searching for the American Dream." Follow her on Twitter: @embeedub. More Mary Elizabeth Williams.
Lessons of a baby bucket list
Avery Lynn Canahuati accomplished a lot in her six months of life. Imagine what the rest of us can do in a lifetime
Avery Lynn Canahuati (Credit: http://averycan.blogspot.com/) What have you accomplished since November? What dreams have you fulfilled? In that time, Avery Lynn Canahuati threw out the first pitch at a baseball game, got a letter from the president and dressed up like a troll doll. She experienced deep love, and changed the lives of her family and friends. And that’s just what Canahuati got done in the first six months of her life. They were also the last.
Canahuati was born in Texas on Nov. 11. This past Good Friday, she was diagnosed with spinal muscular atrophy (SMA), a group of rare neuromuscular diseases that, in her case, were terminal. “We asked our doctors specifically if there is anything. Is there trial drugs, anything out of the country?” her mother, Linda, told CNN this week. So after “sitting around for two days crying and being devastated, since there is no cure and there is nothing we can do,” her father, Mike, decided to make the most of what was left of his daughter’s cruelly brief expected lifespan. Writing in Avery’s voice, he created a blog — and set a few goals.
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Mary Elizabeth Williams is a staff writer for Salon and the author of "Gimme Shelter: My Three Years Searching for the American Dream." Follow her on Twitter: @embeedub. More Mary Elizabeth Williams.
Words we had after he died
When we lost my husband to cancer, my family's world went upside down. We made sense of it the best we could
(Credit: Tinga via Shutterstock) On the day my husband died, our daughter Allison started screaming my name from her bedroom, where she’d taken refuge. I burst open the door, imagining she had hurt herself, but she was just standing there in the center of the room. “Mom. Mom,” she said. “You are a widow now. A widow. I don’t want you to be a widow. You can’t be a widow.” I had to agree: It just didn’t seem possible.
I tried to hold her, but she was hyperventilating a bit. “I’m ‘the girl whose dad died when she was 13′?” she choked out. “Oh my God. That’s who I am now. When people ask me what my dad does, or how we get along, or anything, that’s how I will have to answer: ‘My dad died when I was 13.’”
Continue Reading CloseKathleen Volk Miller is co-editor of Painted Bride Quarterly, co-director of the Drexel Publishing Group and an Associate Teaching Professor at Drexel University. She is a weekly blogger (Thursdays) for Philadelphia Magazine's Philly Post and is currently working on a collection of essays. Follow her @kvm1303. More Kathleen Volk Miller.
Look at my scars
The remnants of my own illness have taught me that when it comes to difference, don't stare -- but don't turn away
(Credit: Natalia Klenova via Shutterstock) “Do I freak you out?” she had asked.
It was the kind of question adults rarely pose. But Abigail (a pseudonym, like some other names in this piece) is 8, and she doesn’t have any qualms about being direct. The person she was asking, my daughter Beatrice, likewise didn’t hesitate in her reply.
Abigail is new to our school this year. She is in every way a typical second-grader, except that she was born without a left hand. It’s a trait that makes her undeniably noticeable, and so, sometimes, people ask questions. Sometimes Abigail has questions of her own. Sometimes, when you’re different, you want to know.
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Mary Elizabeth Williams is a staff writer for Salon and the author of "Gimme Shelter: My Three Years Searching for the American Dream." Follow her on Twitter: @embeedub. More Mary Elizabeth Williams.
Confronting cancer webcast
Full videos posted for Salon Core conversation on "coming out of the sickness closet" VIDEO
My oncologist says that whoever came up with the phrase “the gift of cancer” has the worst taste in gifts she’s ever heard of. But though it’s not exactly a set of car keys under the seat, cancer has, for the past year and a half, been the gift I’ve been given. And from an initial malignant diagnosis of melanoma through surgery through a Stage 4 rediagnosis through a last-ditch, Phase 1 clinical trial to a recovery that has stunned the research community, I’ve shared this adventure with the readers of Salon. And along the way, you’ve given so much in return. You’ve told me your own experiences with illness, with the healthcare system, with grief and frustration, and with the ways a shattering experience — either your own or that of someone you love — can turn life around. Sometimes even for the better. So it was a unique privilege to get to talk to a few of you recently for a Salon webcast, and answer your questions on life here in Cancer Town. For those of you who couldn’t make it live, videos of the full webcast are posted below.

Mary Elizabeth Williams is a staff writer for Salon and the author of "Gimme Shelter: My Three Years Searching for the American Dream." Follow her on Twitter: @embeedub. More Mary Elizabeth Williams.
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