In the Kingdom of the Sick: A Social History of Chronic Illness in America

by Laurie Edwards

  When parenting super-site Babble.com published an article (one of a few) by a mommy-blogger advocating against vaccinations in the summer of 2011—as well as a response to it from a pro-vaccination blogger—the comments were fast and furious, from other parents who agreed vaccination is a personal choice that belongs to each parent and doesn’t affect anyone else to those who believe that matters of public health are just that—public, not personal, and the responsibility of us all.22 Some comments were well reasoned and respectful, some were passionate, some were downright antagonistic.

  My own status as a patient with compromised immune and respiratory systems places me in the highest risk category when it comes to serious manifestations and complications of infectious diseases, meaning I am on the high-priority list when it’s flu vaccine time. For patients like me, the concept of herd immunity is critical. Herd immunity means that if enough of a given population is vaccinated, the likelihood of an unvaccinated person contracting that particular illness goes down. The more infectious and easily transmitted the disease, the higher the number of people who need to be vaccinated for herd immunity to work. Parents who choose not to vaccinate often rely on this built-in protection, but as more families move away from vaccinating, the protection falls apart, and those at high risk for infection because they can’t receive vaccinations are especially vulnerable.23

  Ginger Taylor, whose young son was diagnosed with autism, is well versed in the power of the Internet when it comes to patient advocacy. In fact, after years of researching, writing, and advocating about the association she sees between vaccines and autism, she has gone as far as forming a political party—the Canary Party—to restore a good-faith relationship between providers and patients and to rid the medical establishment of perceived corruption and conflict of interest. She also contributed a chapter to the recently published Vaccine Epidemic: How Corporate Greed, Biased Science, and Coercive Government Threaten Our Human Rights, Our Health, and Our Children. She is passionate about her beliefs and quick to point out that she and many advocates in the autism community are not “anti-vaccine”—the moniker often ascribed to them—but are in favor of safer vaccines on a safer schedule. Taylor does not agree her son even has autism but instead believes he suffered a vaccine injury that left him with encephalopathy (injury to the brain that causes symptoms similar to those of autism) that was misdiagnosed as autism. Autism isn’t a medical disorder, she says, but a description of behaviors.

  In an article published in Wired in 2009, science journalist Amy Wallace describes the backlash against vaccines as “… a product of the era of instant communication and easy access to information.” Wallace, whose article drew intense derision from influential activists and groups who believe vaccines cause autism, continues, “The doubters and deniers are empowered by the Internet (online, nobody knows you’re not a doctor) and helped by the mainstream media, which has an interest in pumping up bad science to create a ‘debate’ where there should be none.”24 I could practically hear the collective groan of physicians when, for example, Oprah Winfrey hosted Jenny McCarthy to talk vaccines and autism. Generation Rescue, the advocacy group espoused most famously by the actress and former Playboy Playmate, is often in the crosshairs of those who believe that evidence-based medicine simply does not support the association between childhood vaccinations and autism and are frustrated that social media helps spread the platform of people without medical training. McCarthy’s initiation into her son’s condition came via Google, where a sponsored link on a search for autism led her to the bustling community of parents and advocates who believe autism is reversible, a message her son’s neurologist did not share. Like Ginger Taylor, McCarthy points out that the “anti-vaccine” tag is a misnomer: she wants a safer schedule with safe vaccines.25

  Celebrity endorsements like McCarthy’s help spread information and popularize opinions, widening the gulf between news media and conventional health communication. “Jenny McCarthy is so outspoken and has such a highly visible platform,” says public health professional Leah Roman, that when she talks about her son she gives a human face to the problem, and it is difficult for science to compete with that. “There are some celebrities on the pro-vaccination campaign, but they’re not being very vocal, we just don’t even think of them,” she says.

  Physicians and public health experts would rather look at the numbers. As vaccination rates drop, cases of preventable and potentially serious infectious diseases like pertussis (whooping cough), meningitis, and measles increase. Consider pertussis, which occurred in one thousand cases in 1976 and climbed to twenty-six thousand cases in 2004 as more parents made the choice not to vaccinate.26 Measles, declared eliminated in the United States in 2000, is on the rise in European countries and is making a comeback here, largely due to international travel. In 2008, a California boy whose parents chose not to vaccinate him caught measles while traveling in Switzerland, infecting two siblings and nine other patients, all of whom were unvaccinated.27 That same year, the parents of ten thousand kindergarten students in California chose not to vaccinate them.28

  That so many associate autism with vaccines is due in part to how much more we see autism now, coupled with the increase in childhood vaccinations. Today, children receive fourteen vaccines in multiple doses that total more than at any point in history, though immunologists clarify that the actual immunological challenge all those doses pose to the body is lower than in the past due to more effective vaccine development.29 The CDC estimates that one out of every 110 children is on the autism spectrum.30 However, since autism was first identified in the 1940s, the definition has broadened to include milder symptoms along a spectrum. That, as well as increased awareness of the symptoms and earlier detection, might help explain the prevalence.

  Karen Weintraub, a health journalist and editor, has researched autism extensively for her book The Autism Revolution, which she wrote with Dr. Martha Herbert. She sees the autism-vaccine situation as unique from other current medical controversies in many ways. Above all, most of these advocates are parents who desperately want their once-healthy children to be better.

  “They have a tremendous and crushing sense of loss. Most also feel guilty—that they could/should have protected their child from this ailment … it seems deeper somehow than for the parent, say, of a diabetic kid, at least among my small sampling of friends and relatives,” she says. While parents whose children have other conditions may be just as likely to use social media to share information, she sees autism as an outlier because while it is fairly common, so little is known about effective treatments. Since no better explanation has emerged for what’s wrong with their children, parents target vaccines.

  “Shots make kids cry. Sometimes they make kids sick. Regressive autism starts around the same time as eighteen-month shots,” Weintraub says, explaining why so many parents are quick to trace the onset of their children’s symptoms to their vaccinations. I’ve spent hours reading blog posts and articles about vaccines and autism, and comment after comment from parents of children with autism starts with some variation of “my child was totally normal, healthy, and social until he/she got his/her shots.” For many, that was the turning point, usually followed by unabated crying and fussiness, then stomach problems, and then the chattering and social behavior started to slow down. It is easy to look at the situation objectively and intellectually and say that correlation does not mean causation, but this drama doesn’t play out in the realm of the theoretical, and that distinction means little in the face of the overwhelming emotion involved. These are parents who are scared and angry and want the best for their children.

  “Frankly, the ‘we must stay on message’ approach of public health officials doesn’t always help, either,” Weintraub says, pointing out that vaccines do, in fact, harm a small number of children. The National Vaccine Injury Compensation Program was established by the federal government to pay for medical care for patients with vaccine injuries. It also relieves the liabilit
y for vaccine makers who would otherwise get out of the business. “If public health officials were or had been more willing to admit that vaccines are imperfect, the parents might have felt they’d been ‘heard’ by the feds, and not reacted as strongly. At this point, some public health officials will occasionally say things like this out loud, but the damage is already done.”

  The sense of loss, coupled with the alienation many parents feel from the medical establishment and the government, leaves a void in terms of treatment, support, and communication—and that is where technology and social media really factor. The Internet has created a class of what Ginger Taylor calls highly medically literate and informed patients and parents. Her journey began right after her young son was diagnosed. Like so many parents, she looked on a Yahoo disease group and began an online conversation with other parents whose children had the same experiences with diverse symptoms and stories—skin problems and colic as infants, noticeable changes in behavior around the time of vaccinations, gastrointestinal difficulties, etc.—that their physicians were not taking into account or willing to discuss.

  “Social media changed things dramatically,” she says.

  Taylor, who has a master’s degree in clinical counseling and an affinity for research, jumped headfirst into the mix, collecting articles and ideas for her son’s pediatrician to discuss. She read all the articles she found herself, rather than relying on the interpretation that professional societies or organizations offered. While it was helpful for her to read articles and initiate a dialogue, it strained the relationship with her son’s pediatrician. The pediatrician didn’t want to talk about her research and wasn’t interested in discussing alternative interventions such as the gluten-free, casein-free diet many parents say helps with behavioral problems.

  “For years we have heard that patients need to take more responsibility for their health and our community has,” she says. She is frustrated that she is doing just that and most physicians aren’t willing to collaborate with her and the many other parents out there doing the same things. It isn’t just that the physicians don’t want to discuss others treatments; she sees very little interest among physicians in doing the research that could actually confirm or support many of the interventions parents are already using. This unwillingness has caused a divide between parents and families and their doctors that is so pervasive many feel they have to leave mainstream medicine altogether.

  “At this point, there is zero interest from people in the medical establishment in restoring faith … They don’t care, they have their agenda, [and after] more than a decade of good-faith actions on the part of parents to work on the problem, we are met with at best being placated. At worst, they go after the doctors who help us, attack us in public, use the phrase ‘desperate parent’ regularly,” Taylor says. “Good faith absolutely [has been] destroyed; the only thing that can change is getting corrupt public officials fired.”

  I asked Taylor about the charge that evidence-based medicine does not support any link between the development of autism and vaccinations. She disagrees there is no link between vaccines and autism because she disputes the legitimacy of the evidence itself: the people who control what is published are the same ones who do the research and control the funding, and from her point of view, of course they are not going to publish research that contradicts their positions.

  “It is astonishing to me how unoriginal medical corruption is,” Taylor says, looking at Lyme disease and other controversial diagnoses as emerging parallels to what she and other parents and advocates have experienced, treatment she considers a “war against the patient.”

  Disease advocates like Taylor see the situation as a war against the patient, but many on the other side see such controversies as a war against science, with social media as a formidable force. Pro-vaccine advocates point out that vaccines give us the luxury to even think about debating them—vaccines are often called victims of their own success—and that if we lived with the immediate threat of illness or death from infectious disease previous generations did, talk of delayed vaccination schedules or opting out of vaccinations altogether would not occur.

  “Of course parents are eager to discover the cause of autism so that it can be treated—but unfortunately, some have simply decided to attribute the cause to something random and unrelated. Vaccines are not the cause of autism—and some advocacy groups have squandered their energy on promoting a theory that is not based on evidence. Imagine how much more useful it would have been to direct that fervor to finding the real cause,” Dr. Val Jones says. “Instead, some advocacy groups have whipped everyone into a state of paranoia over a preventive procedure (vaccination) that is one of the greatest triumphs of modern medicine.” In a parallel universe, she says, scientists have discovered genes31 associated with autism and we are now beginning to unravel the genetics of the disease. A 2011 study in Pediatrics found that parents who have one child with autism have a much greater risk than previously thought—a one in five chance—of having a second child with the condition. That child’s risk is nearly twenty times greater than that of a child in the general population, though researchers caution that genetics alone cannot explain autism.32 Since it is widely believed to be a multifactorial condition, other groups are interested in exploring possible environmental and social influences further as well.

  For many, the common goal—and one that is so hard to locate beneath the strife and the polarization—is more research that can answer some of these questions about what causes autism more definitively, so we can better help patients and families.

  Others are concerned with making sure the scope of services offered to patients is appropriate and comprehensive, and, again, they rely on the Internet and social media to spread their message. Gina Terrasi Gallagher, a parent of a daughter with Asperger’s (a high-functioning condition on the autism spectrum) and a daughter with learning disabilities, did more than participate in online conversations. She penned Shut Up About … Your Perfect Kid! a book for parents of children with special needs, and her book’s social media following on Facebook numbers in the thousands and continues to grow.

  “Some folks tell us that this page has saved their lives. They come here to share joys, challenges, and to exchange information. It’s very difficult for folks to connect in person because they don’t want to violate their children’s privacy with people who know them. The Facebook page allows them to connect with parents around the world who ‘get it.’ Many parents have suffered in silence with no one to talk to. Now when something happens, they have a place to share their news or vent,” she says.

  Gallagher knew she had to be cautious about looking up information for her daughter online. With the abundance of interventions and advice out there, it is difficult to wade through and figure out what is legitimate, especially when parents feel they can’t turn to their children’s pediatricians for help.

  “I think it’s critical that pediatricians have this knowledge and provide compassion to parents. It’s overwhelming to learn your child has a disability and difficult to know where to turn since there is so much information out there online,” she says.

  Still, the benefits are clear. For Gallagher, social media has presented opportunities not just for emotional support or connection but for education and advocacy as well. Her advocacy is focused on helping her daughters get the most support and resources they need to meet with the most success. She is less concerned with sourcing why her daughter manifested autism (though she does think there is something to the vaccination link), particularly since her daughter is doing so well.

  “I’m sure if she were struggling, I would be more outraged and committed to finding a cure and finding the source of the disability,” she says. “My daughter hates when people talk about ‘curing her.’ It makes her sound as though she is not okay the way she is. I’ve tried to tell her that she’s a bright person capable of achieving all the goals she sets in life.” In that sense, Gallagher is making the same ch
oice parents, patients, advocates, and organizations across the disease spectrum must make, and have been making for decades: where best to allocate our time, energy, and resources.

  How did we get from Jennifer Crystal, one patient dealing with the lifelong effects of a tiny tick bite, to Aviva Brandt’s assertion that blogging saved her sanity, all the way to the online debates over vaccines and autism? Patients became wired, and as individuals, logging onto their computers became something much more than locating definitions or looking up symptoms. It became the antidote to the alienation, isolation, and skepticism so many felt. Technology amplified our questions and our worries, our assumptions and our expectations. Without question, chronic Lyme and autism are richly detailed and harrowing case studies in present-day disease and advocacy. However, in the broader context of chronic illness and technology, they illustrate a new twist in the “us versus them” mentality, one that goes beyond the usual divisions. This new chasm is one that social media make possible: the old guard of conventional medicine, rooted in medical journals and conferences, versus the new guard, who use everything from Twitter and Facebook to blogs, podcasts, and viral petitions and campaigns to share information and collaborate.

  The immediacy of social media, where links go out in real time and off-the-cuff remarks have a permanent Internet footprint, is a central factor here. Dissemination of information works much differently in the public health sphere, and in research in general. It can take several years for a study to come together, and even longer for it to go through the peer review process and eventually get published in a journal. “Public health officials are trained not to make statements without research to back it up,” says Leah Roman. When it comes to social media, “[this] doesn’t work to our advantage.”