My doctor always walks into the exam room smiling. It’s not necessarily the countenance you’d expect from a man who spends much of his time working with people with Stage 3 and Stage 4 cancers — the kind that haven’t responded to other forms of treatment. Yet even when we speak on the phone, I sometimes swear I can hear him smiling. Granted, I’ve given my doctor something to smile about – I’ve been doing spectacularly well in my Phase I trial, delivering CT scan results that he appreciatively refers to as “neat.” Yet the extraordinary thing about my doctor is that he was smiling the day I met him, when I was facing a diagnosis that put my long-term odds of survival in the “probably not going to happen” range. And from that first grin, he deflated my terror and made me believe I was in the hands of someone not just invested in my wellness, but downright optimistic about it.
A natively cheerful demeanor isn’t a requirement for being a competent healer. But what is far too often lost in our grueling, impersonal and cost-driven healthcare system is the basic fact that a human being in the chaotic and scary world of injury or illness deserves sensitivity and compassion. That a shivering person in a paper dress deserves dignity. So if you’re a doctor, nurse or technician, here’s your reminder. And if you’ve ever been a patient, we’d love to read your own additions to the list.
Take your hand off the goddamn doorknob already.
We know you are incredibly busy and important and that your office has wildly overbooked your schedule today. You know what, though? It’s not our job to streamline your day. Conveying information while you’re walking out the door may work if you’re a character on “Revenge,” but it’s a crummy way to have a conversation with a person about his or her health. We just sat out in the waiting room for 45 minutes reading last week’s hype-trolling issue of Time magazine; we’ve sat here in a robe for a half-hour looking at the pain assessment chart. Now you can at least pretend to give us your full attention for the five minutes you’re prodding our vulnerable, unclad bodies. You’ll immediately rise in our esteem.
Dr. Carma Bylund, director of the CommSkil program at Memorial Sloan-Kettering, notes that studies have shown that “when a doctor comes into the room and sits down with the patient, the patient perceives the visit as longer. The doctors are at eye level; they’re attentive — and they can’t put a hand on the doorknob.”
Remember that this random collection of faulty parts is a person.
At a Times talk last winter, Will Reiser, the writer of “50/50,” admitted he’d loosely based the poker-faced oncologist of the film on his own doctor, referring to him as “a mechanic” who saw him as the car he had to fix. It was a generous assessment of clinical sangfroid, one that acknowledged that nobody wants a doctor who’s lacking in the professional boundaries department. But that doesn’t mean you should let yourself turn into a robot.
Early in my treatment, I had a doctor on my clinical trial bring in a team of research fellows to look at “the tumor.” That the tumor had a sentient human host seemed utterly irrelevant to him. And when my friend Ariel had a miscarriage, the sonogram technician confirmed it by briskly announcing, “Yup, no heartbeat,” and walking out of the room. This is what is known, in medical terms, as a nightmare.
You may deal in tumors and miscarriages in a revolving door of horrible things all day long, but your patients live in a very different world. Their tumors and miscarriages and dying parents are pretty important to them. The moment they become trivial to you, seriously rethink why you ever wanted to do this for a living.
Consider that the patient is telling you something the charts don’t.
“I had one endocrinologist clearly point out during my exam all of the physical characteristics that lead him to believe I was hypothyroid and had adrenal function issues,” says my friend Alice. “He pointed out stretch marks (without childbirth). He pointed out dry skin. He pointed out my premature gray hair (specifically a prevalent streak near my forehead). My weight gain and inability to lose weight. Quite a few other characteristics. But the lab tests came back ‘normal’ and that is literally what he offered me. ‘Your tests say normal so there is nothing wrong.’” Can you understand why Alice was exasperated?
Most of us truly get it that doctors don’t know everything. We don’t expect all-seeing miracle workers. And we understand that some patients are either incapable of giving accurate information or are just plain wrong about what they believe they have. But a person who is suffering, who is symptomatic, is entitled to a fair and thorough investigation – and if you can’t provide it, please, suggest somebody who can. Don’t shrug off pain with a blasé suggestion of Tylenol or cutting out dairy and not even look at the person. Instead, be like the doctor who once told me, “There’s always something more we can do for a patient.” Do something more.
Accept that we didn’t go to medical school
You know how you’re rattling off protocols and surgery plans and fancy words for body parts we didn’t even know we had? Whoa whoa whoa – slow down there, partner. You’re talking to someone who may not know a colostomy from a semicolon. Your rapid-fire delivery is intimidating and scary. It makes us feel stupid and bothersome, like we should know all this stuff and not ask questions.
“Doctors forget that the minute a patient hears bad news or that there’s a problem, patients stop listening,” says my doctor friend Joe. “Or if they hear anything, they’re hearing incomplete info. The onus then is on us to find ways to help patients understand what just happened, whether it’s writing down instructions, calling a patient later in the day after the dust settles, or simply asking a patient to repeat something back.”
“Healthcare providers often have a kind of script,” adds Dr. Bylund. “They may have certain things they may always say to everybody. We teach doctors to check patients’ understanding and use that to tailor consultation to the person’s needs. Say things like, ‘Tell me what you know about your disease,’ or ‘Tell me what your last doctor said.’ And we show them how people’s past experiences may impact their choices now.” Maybe we don’t know anything about Parkinson’s. Maybe we know a harrowing amount because of what Mom went through, and we’re frightened to death of it. Start with what we know before you dump everything you know on us.
Leah Berkenwald, a health communication student and writer, says, “What good is the diagnosis or treatment if a patient cannot understand it or follow instructions? What is often deemed noncompliance is often a result of a failure to communicate.” And, she says, “It doesn’t matter how good a physician is at diagnosis or treatment if the patient doesn’t understand what they’re supposed to do, how to do it, or why it matters. Medical knowledge and clinical skill become moot when a physician makes assumptions about their patients’ cultural values, beliefs and practices.”
Talk frankly about how we’ll pay for this – and don’t assume anything
As Salon reader Lila says, “The calculation about what choices are available to me seems to be made before I hear the medical advice … Don’t get me wrong, it can be tricky for individuals to figure out how to afford healthcare, and I’m glad for healthcare professionals’ sensitivity to that. But when my husband was being sent home from the hospital — too early, we felt — a problem came to light: The doctor finally said she too felt it was too early but said the insurance wouldn’t pay another day. In fact she was wrong (and the insurance ultimately did pay another day), but more problematic is that she made a decision to discharge based upon something other than medical reasons — and we didn’t know that was happening.”
Nobody – on either the medical or patient end – wants to get walloped with a contentious bill. So talk to us so we can work together to get the most care for the buck. Don’t treat us like dirtbags if we’re out of network or uninsured, either; work with us to find other options. And you can pass that tidbit on to your office staff. Imagine what it feels like to be both sick and poor — now imagine what it’s like to add “demeaned” to your list of problems.
All of us, even the strongest among us, find ourselves on the business end of the stethoscope sometimes. And though it seems pretty basic, I’ll let a real doctor say it so you take it seriously: “Ultimately, health and wellness have a lot to do with the comfort a patient has with a doctor. You’ll give better information when you have a doctor who makes you feel secure,” says Dr. Bylund. When you’re compassionate to us, we’ll show up for our checkups. We’ll be honest about conditions and circumstances, because we aren’t afraid of being shamed or judged. We’ll still put our faith in science, and accept that pain and sickness are sometimes unavoidable. But we’ll be less scared when we walk through those very scary doors. And though we’ll do our best to ward off disease, we’ll gladly submit to something infectious – the power of being decent, and your faith in us.
This piece originally appeared on
AlterNet.
Almost two full years after the BP oil spill, a panel of experts gathered at the 17th annual Tulane Environmental Law Summit, to present the continuing impacts of the BP Oil Spill. That spill began with the April 20, 2010, explosion of the Deepwater Horizon drilling unit used by BP 40 miles off the Louisiana coast. Eleven men lost their lives. The resulting spill of oil into the Gulf of Mexico stands as the largest oil spill in U.S. history and the second largest environmental disaster in this country to date besides the nearly decade-long Dust Bowl of the 1930s. Scientists at the summit presented recent photographs of shrimp with no eyes and fish with cancerous tumors born long after the gulf was declared “safe” for fishing.
It turns out that testing water and fish flesh under the surface oil after the spill was not very telling about long-term impacts as oil and water don’t mix and the chronic, toxic impacts were delayed until long after BP was put in charge of the “cleanup.” When BP sprayed chemical dispersants containing a slew of toxic heavy metals including arsenic, the oil didn’t magically disappear. It sank into the sediment. Disturbingly, the allowable levels set by the government for the toxins in our seafood are based on health impacts for a 176-pound adult eating less than two medium shrimp a day. The testing is for one chemical out of a crude oil mixture containing thousands of chemicals. No synergistic effects are considered. This in no way protects children, fetuses, people who weigh less than 176 pounds or anyone who eats seafood on a daily basis like the folks here on the Gulf Coast.
Dr. Andrew Whitehead, Ph.D., associate professor, Department of Biological Sciences, Louisiana State University, who is studying the BP spill and has reviewed much of the scientific studies of the Exxon Valdez spill, explained that stock declines of species may take several years to develop as reproduction is impacted in successive generations and across species. The Exxon Valdez spill is now known to be responsible for the decline of many species, including marine mammals, marine birds, and fishes such as pink salmon and herring. Though we have a take on the immediate acute impacts of the BP spill on animals caught in the oil, the chronic ultimate impacts of the BP spill are still unknown. But we do know that the killifish, the most abundant forage fish for the bigger fish in Gulf Coast marshes, are being affected. Fish from oiled marshes show signs of direct toxicity and reproductive impairment. Dr. Whitehead’s experiments involving exposures to oiled sediments, done in collaboration with colleague Dr. Fernando Galvez, show that killifish embryos are taking longer to develop or don’t hatch at all. They are being born with malformed hearts and hearts that may not function properly when they mature. And as the impacts from the spill on the fish bioaccumulate and propagate across generations, liability is harder to prove without good and strategic scientific study that sadly is harder to fund.
But some impacts are being felt now, especially for sediment dwelling seafood. Current reports from fisherman up and down the coast are startling. The oyster harvest for 2010 was the worst in more than four decades and oystermen continue to report catches down as much as 75 percent. Crab catches are in steep decline. Brown shrimp production is down two-thirds. And the white shrimp season was even worse, leading to descriptions of “worst in memory” and “nonexistent.” This from the region that before the spill provided 40 percent of the nation’s seafood.
Dr. Patricia Williams, Ph.D., Diplomate of the American Board of Toxicology, Associate Professor, Coordinator of Toxicology Research Laboratories, Pontchartrain Institute for Environmental Sciences, University of New Orleans, spoke at the summit about what she sees as a failure to properly assess the impact of the spill on seafood and on human health. She said:
In 1996, the National Oceanic and Atmospheric Administration acknowledged that direct measurement of tissue for PAH (polycyclic aromatic hydrocarbon) concentrations generally does not provide a useful indicator of exposure of fish to PAHs from petroleum spills. Regardless, an extremely expensive seafood testing program was launched using this method. Testing included only 13 PAH parent compounds out of 200 PAHs present in crude oil. PAHs act on each other resulting in greater toxicity than expected from a single PAH (synergism). The synergistic nature of the PAHs were ignored in interpretation of the results. Additionally, the Levels of Concern were calculated for a 176 pound individual. This does not address toddlers and children or the developing fetus and placental transfer. The public was not warned of these deficiencies in the seafood testing program.
Dr. Williams explained that “PAHs are endocrine disruptors that interfere with the normal blood-borne hormones (e.g., estrogen and testosterone) that are responsible for the regulation of reproductive and developmental processes. Only very low amounts of chemicals are needed to disrupt the normal endocrine balance of both humans and animals. Evidence of reproduction imbalance is seen in the second generation of white shrimp in the 2011 harvest. Shrimp were harvested with defective eye stalks, pleopods, and pereiopods. Such anatomical defects are occurring in the markedly reduced white shrimp population in the Gulf and warn of endocrine dysfunction that could result in the loss of the species.”
Furthermore, “The heavy metals known to be present in crude oil are being ignored in the testing of seafood. Metal toxicity can produce neurobehavioral abnormalities in sea life such as: alterations in avoidance or attraction responses; critical swimming speed; changes in social interactions (e.g. aggression), reproduction, feeding, and predator avoidance; food foraging with reduced feeding ability; loss or orientation in swimming and changes in schooling behavior. Heavy metal testing in BP Oil clean-up workers has documented increased arsenic levels in 24 hour urine specimens.”
Finally, Dr. Williams warned that “The future chronic health effects from consumption of contaminated seafood and biomagnification along the food chain are yet to be realized in both sea life and humans. Chronic effects may take years to present and may elude an analysis of their causal origins. ”
On the second day of the summit, a settlement between private plaintiffs and BP was announced in the press. This settlement does not resolve the government cases, either civil or criminal, against the responsible parties. But the settlement of the private case raises the question whether the government prosecutions will be resolved without a trial and without jail time for executives ultimately responsible for the deaths of 11 workers and severe and ongoing environmental and economic impacts on the region. The summit attendees were abuzz with speculation about what will happen in the federal and State of Louisiana cases.
In Louisiana, petroleum is king. This state is the third largest producer of petroleum in America, Louisiana is responsible for more than one-quarter of the nation’s natural gas production, and Louisiana is the third leading refiner of petroleum in the country. In addition, the state makes over 600 petroleum products making it the second in the nation in primary production of petrochemicals. The 20-mile stretch on the Mississippi from New Orleans to Baton Rouge known as “The Cancer Corridor” pumps out one-quarter of the chemicals made in America. Louisiana leads the United States in release of toxic chemicals into the environment. The seven-parish industrial corridor has the highest density of petrochemical industries in the nation and possibly the world.
All this money in petroleum has a huge impact on politics in Louisiana, just as it does on a national and international level. It’s probably impossible to get elected to any Louisiana office without courting petroleum dollars and making campaign promises to that industry. A visit to the petroleum friendly website for the Louisiana Department of Natural Resources reveals the following section titled “Legacy Liability Reform.”
This “Legacy Liability Reform” is less likely to ensure any protection for Louisiana’s resources or its citizens than it is to assure petroleum companies that Louisiana and its resources are theirs for the taking. The reform is code for “don’t worry about liability because immunity for really bad stuff is all part of the deal for investing in Louisiana.” Oh, by the way, the Louisiana courts have been very protective historically of petroleum interests as well.
From the 1950s on, drilling for oil and gas on federal lands and waters has produced the second largest source of revenue for the federal government besides taxes. This has led to a rather cozy relationship between the federal government and those corporations that extract petroleum here. Let us not forget that since the inception of the Minerals Management Service (now renamed the Bureau of Ocean Energy Management, Regulation and Enforcement to emphasize what it should be doing) has been involved in numerous scandals. For example, in 1990, MMS employees were linked to prostitution, and in 2008 the Department of Interior’s inspector general reported that MMS employees were engaged in both drug use and sexual activity with employees from the very energy firms they were to be regulating. This wasn’t just the foxes guarding the chicken coop, but the foxes actually in bed doing lines of coke with the chickens.
Clint Guidry, president, Louisiana Shrimp Association, spoke at the summit about the political ramifications of the spill and the unlikelihood of real justice coming from the government case. Mr. Guidry had worked for BP earlier in his career like so many Louisiana men have. He knows intimately both the oil industry and the fishing industry. When the spill happened, Louisiana shrimping was devastated. First, Guidry lobbied for jobs for all the shrimpers when the fisheries closed. Then he fought for job site safety for the workers and community residents impacted by the cleanup. Guidry’s role became that of witness to the harms on fisherman response workers when they began to suffer from being exposed to aerial application of the chemical dispersant and being downwind from burn sites of the surface oil. For instance, on May 26 seven shrimpers from the offshore response crew were admitted to West Jefferson Hospital with chemical poisoning. Two days later, after Obama’s May 27 visit to Grand Isle where he was photographed picking up tar balls, two more shrimpers were airlifted to West Jefferson Hospital for emergency medical treatment, also for chemical poisoning. Guidry met with the Occupational Health and Safety Administration, the U.S. Coast Guard, the National Institute for Occupational Health and Safety, and with other government representatives from the local to the federal including Secretaries Napolitano and Salazar and U.S. EPA Administrator Lisa Jackson.
Mr. Guidry still has the following unresolved questions:
- Why did we allow people who caused the oil spill to be in charge of the cleanup? Everything they did was to limit liability, not to protect the environment, the resources or the people.
- How could the government announce on Aug. 5, 2010, that suddenly 75 percent of the oil had disappeared? Corporations run this country and they operate under the Golden Rule: Who holds the gold makes the rule.
- According to statements made by Louisiana Coastal Protection and Restoration Authority Chairman Garret Graves, BP is choosing the direction of the environmental damage assessment. Shouldn’t the Oil Spill Recovery fund be administered independently so it could fund real scientists like Dr. Whitehead?
- Oil companies are good at covering up spills and sinking the oil with additional chemicals, but they are no good at cleaning up spills. If we are allowing these companies to drill in the Gulf, shouldn’t they be required to have the technology to prevent disasters and to clean them up? They don’t.
- Even after the largest loss of life and oil, no laws have been changed. Eleven men are dead but I don’t believe anybody will go to jail. The government is the keeper of the record of the criminal investigation and if they settle the case, the public will never see that information. If the record is not made public in a trial, how do we learn from this spill?
- I’m a third generation fisherman. We were the first environmentalists because if you don’t take care of the environment, it doesn’t take care of you. I love wildlife. The spill has devastated wildlife. What price do you put on a dead dolphin?
- The head of Minerals Management Service at the time of the BP disaster came from big oil. She was fired by Obama and MMS was split up but no one else was fired. Is that enough house cleaning? Can these people keep us safe when they have failed in the past?
As the federal government and affected states including Louisiana move toward trial or settlement, we should all be asking these questions.
How will the government cases be resolved? Potential penalties of more than $17 billion for environmental violations remain on the books for BP. Peter Lehner, executive director of Natural Resources Defense Counsel writes in his blog, “How the remainder of the case pans out says a lot about the future of energy in this country. Will the government allow BP, and the rest of the oil industry, to continue business as usual with nothing more than a slap on the wrist? Or will the company be put on trial and held accountable for its actions? Will the penalties be severe enough to make the oil industry clean up its act? BP reported profits of $21.7 billion in 2011, nearly 3 times the estimated cost of its settlement with private parties in the Gulf.”
And one question looms even larger than the spill, the resulting legal cases or even BP profits: How can we establish a separation between the oil industry and our government?
It’s an accepted – and often much appreciated – fact of modern American life that there aren’t too many places you can smoke. It’s been a long time since anybody was allowed to light up on an airplane, in an office, in most bars and restaurants. In New York City, you’re not even legally permitted to smoke in many outdoor public places. And in Orange County, you can’t light up on your own patio or balcony. Well, at least you can still come smoke in your own home, right? I said, right?
Not so fast, Don Draper.
On Wednesday, the city of Elk Grove, Calif., began discussions to ban smoking from rental apartments. Unsurprisingly, the California Apartment Association and the Rental Housing Association of Sacramento Valley are opposed to the smoker-repelling measure. The Sacramento County Tobacco Control Coalition, meanwhile, is urging the city to become the first in the county to enforce an apartment-smoking ban. Several complexes in Elk Grove already have privately issued residential smoking bans — bans that are echoed in apartment complexes and co-ops around the country.
But the possibility of making a smoking ban a city issue is a thorny issue, one that permeates the public and private sectors like a freshly lit Newport on wool fibers. Cigarette smoke unquestionably and unavoidably stinks. It’s also a bona fide health hazard, especially for the very young, the elderly and people with compromised immune systems. And it’s not like your neighbor’s smoke stays neatly in your neighbor’s two-bedroom. As local resident Mimi Dixon, who lives in a senior facility, told the city council recently, secondhand smoke “comes in through the walls, the plumbing, through the lighting. It comes through everywhere.”
As someone who’d prefer her own home not smell like an ’80s frat party, I’m not thrilled when the heady aroma of tobacco (or other smokable substances) wafts into my apartment. And if my building were to suddenly issue an all-points ban on smoking, it would bother me only to the extent that our awesome, eternally puffing super would probably have to move. But I was more aromatically offended when we had a neighbor who had cats and a penchant for never cleaning the litter box. True, secondhand cat box stink isn’t a health issue, but how serious a threat is a smoker when you’re not under the same roof?
Left to the needs and desires of individual landlords, co-operative shareholders and tenants, smoking bans can potentially raise the value of a property and increase the quality of life for everybody. But when it becomes a city mandate about what you can do with a legal substance in your own home, it’s an encroachment on the privacy of everybody, not just smokers. And that shouldn’t make anybody feel like breathing easier.
“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.
We haven’t even turned the page on the controversy over contraceptives, health care and religious freedom when another thorny one arises involving personal conscience and public health. A flurry of stories over the past few days coincided with seeing a movie that inspires more than passing interest in their subject.
Steven Soderbergh’s film “Contagion” came out a few months ago and was inexplicably and completely frozen out of the Oscar nominations. But it is the most plausible experience of a global pandemic plague you’re likely to see until the real thing strikes. With outstanding performances from an ensemble cast that includes Matt Damon, Kate Winslet, Gwyneth Paltrow and Laurence Fishburne,”Contagion” is stark, beautiful in its own terrifying way, and all-too-believable. The story tracks the swift progress of a deadly airborne virus from Hong Kong to Minneapolis and Tokyo to London — from a handful of peanuts to a credit card to the cough of a stranger on a subway. Rarely does a film issue such an inescapable invitation to think: it could happen; that could be us. What would we do?
With “Contagion” making such a powerful impression, for several days news articles seemed to keep popping up about contagious disease and the conflict between religious beliefs and immunization. There was nothing new about the basics: All 50 states require some specific vaccinations for kids, yet all of them grant exemptions for medical reasons – say, for a child with cancer. Almost all of them grant religious exemptions. And twenty states allow exemptions for personal, moral, or other beliefs.
According to the February 15 edition of The Wall Street Journal, a number of pediatricians are dropping families from their practices when the parents refuse immunization for their kids. “In a study of Connecticut pediatricians published last year,” the paper reported, “some 30 percent of 133 doctors said they had asked a family to leave their practice for vaccine refusal, and a recent survey of 909 Midwestern pediatricians found that 21 percent reported discharging families for the same reason.” They add:
By comparison, in 2001 and 2006 about 6 percent of physicians said they “routinely” stopped working with families due to parents’ continued vaccine refusal and 16 percent “sometimes” dismissed them, according to surveys conducted then by the American Academy of Pediatrics.
But some parents still fear a link between vaccinations and autism, a possibility science has largely debunked. Some parents just want to be in charge of what’s put into their children’s bodies, as one West Virginia politician puts it. And some parents just don’t trust science, period — a few have even been known to fake religion to avoid vaccinating their kids. So there are many loopholes. But now seven states are considering legislation to make it even easier for mothers and fathers to spare their children from vaccinations, especially on religious grounds.
In Oregon, according to a story by Jennifer Anderson in The Portland Tribune, the number of kindergartners with religious exemptions is up from 3.7 percent to 5.6 percent in just four years, and continuing to rise. This has public health officials clicking their calculators and keeping their eye on what’s called “herd immunity.” A certain number of any population group needs to have been vaccinated — 80 percent for most diseases, 92 percent for whooping cough – to maintain the ability of the whole population — “the herd” — to resist the spread of a disease.
Ms. Anderson offers the example of what used to be called “the German measles” – rubella. All it takes are five unvaccinated kids in a class of 25 for the herd immunity to break down, creating an opportunity for the disease to spread to younger siblings and other medically vulnerable people who can’t be vaccinated. If you were traveling to Europe between 2009 and 2011, you may remember warnings about the huge outbreak of measles there, brought on by a failure “to vaccinate susceptible populations.”
Here in the United States, several recent outbreaks of measles have been traced to pockets of unvaccinated children in states that allow personal belief exemptions. The Reuters news service recently reported 13 confirmed cases of measles in central Indiana. Two of them were people who showed up to party two days before the Super Bowl in Indianapolis. Patriots and Giants fans back east were alerted. So far, no news is good news.
But this is serious business, made more so by complacency. Older generations remember when measles killed up to 500 people a year before we started vaccinating against them in 1963. The great flu pandemic of 1918 killed ten times more Americans than died in the Great World War that ended that year and took the lives of as many as forty million globally. Our generation was also stalked by small pox, polio, and whooping cough before there were vaccinations.
In a country where few remember those diseases, it’s easy to think, “What’s to worry?” But as the movie “Contagion” so forcefully and hauntingly reminds us, the earth is now flat. Seven billion people live on it, and our human herd moves on a conveyer belt of perpetual mobility, so that a virus can travel as swiftly as a voice from one cell phone to another.
When and if a contagion strikes, we can’t count on divine intervention to spare us. That’s when you want a darn good scientist in a research lab. We’ll need all the help we can get from knowledge and her offspring.
(Credit: Everett Collection via Shutterstock) 
This 2011 photo provided by Donald Waters shows a fish harvested from the Gulf of Mexico with unusual lesions and infections. Two years after the Deepwater Horizon rig exploded and sank, touching off the worst offshore spill in U.S. history, the latest research into its effects is starting to back up those early reports from the docks: The ailing fish bear hallmarks of diseases tied to petroleum and other pollutants. (AP Photo/Courtesy Donald Waters) (Credit: AP) 
(Credit: iStockphoto/2StockMedia) 
(Credit: jcjgphotography and Monkey Business Images via Shutterstock) 
Kate Winslet in "Contagion" 
