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

by Laurie Edwards

  Still, when they can connect, patients with chronic illness can benefit greatly from the online world. Blogging and online health discussions are especially popular avenues for people with chronic disease. Once demographic variables are controlled, being chronically ill significantly increases users’ likelihood to say they work on a blog or contribute to an online discussion, a List-serv, or other online group forum that helps people with personal issues or health problems.15 What’s more, once a patient is online, living with chronic diseases is associated with a greater chance of accessing user-generated content like blog posts, hospital reviews, doctor reviews, or podcasts. This is a more dynamic use of the Internet that allows patients to use it as a means of communication, rather than simply a static source of information.16 Patients don’t just want to know the name and side effects of a medication, for example. They want to know what it is like to live with those side effects, what tips or tricks they might use to make the process easier, and if there are other treatment options that might be worth considering.

  For Aviva Brandt, the journalist with the undiagnosed pain and fatigue condition, the Internet has become an essential part of her experience as a patient. As a former reporter, she is used to asking questions and needing to know all the details, so she does her own research online about everything from her myriad symptoms to the side effects of various medicines her doctor might prescribe. While the informational aspect of online resources is undeniably helpful, it is the connection and communication with other patients that has proved especially valuable.

  “Blogging has saved my sanity, I think,” says Brandt, whose blogging endeavors allow her to share her voice and connect with others. “It’s a safe space for me to examine the progress of my mystery illness and talk about how it has affected me and my family emotionally, without feeling like I’m putting too big a burden on any one person by confiding in them … I hear from people who suffer similar symptoms, or love someone who does, and they share their diagnoses with me, the treatments that have been helpful and those that weren’t,” she says. She sees a real sense of community among those blogging on chronic health issues, and some even meet in real life.

  Recent data support Brandt’s online experiences. For example, Internet users with at least one chronic condition are more likely than those without to engage in the following activities: 37 percent have read someone else’s health commentary online (versus 31 percent of those reporting no chronic conditions); 31 percent have watched a health video online (versus 22 percent of those reporting no chronic conditions); and 23 percent have signed up to receive e-mail updates about certain health topics, compared to 9 percent of those who do not report any health conditions.17 Most people living with chronic illness do not attend in-person support groups and workshops—despite their utility—and instead mobilize their support system through e-mail, caregiving sites, and other social networks where they are in charge of their health narratives.18 This makes sense, when you consider the time and physical effort it takes to make regular in-person support group meetings. Twenty percent of the users of social network sites who are living with chronic conditions use these sites to gather health information, compared with 12 percent of users of social network sites who report no chronic conditions.

  “The Social Life of Health Information,” a report by Susannah Fox and colleagues at the Pew Research Center’s Internet and American Life Project, offers a compelling illustration of the breadth of connection and camaraderie social networks offer patients. When social network users participating in a study were asked which group was more helpful when they needed certain types of information, health care professionals were the preferred choice for technical information. However, when the questions involved how to deal with a health problem or how to find quick relief from symptoms, fellow patients, friends, and family members were favored sources.19 The variety of resources for peer support continue to grow, from older List-servs and online discussion boards to blogs and more robust health channels and social networks such as Patients Like Me, which allows patients to share data about their conditions, symptoms, and treatments. These technologies are often lumped together under the umbrella term Health 2.0, which I use to mean networks and social media tools that allow patients (as well as health professionals) to share information. The availability of health information is important, but here the patient or Internet user as the gatekeeper of his or her health narrative is also significant.

  The constant sharing and commiseration can have the opposite effect. When she was too sick to get out of bed, Jennifer Crystal joined an online support group. After a while, it became overwhelming and frustrating to read everyone else’s travails, and she would end up feeling hopeless instead of hopeful. Given that my only interaction with patients with PCD is virtual—a common reality of life among people with rare diseases—I can certainly relate to Crystal’s experiences. Sometimes, the e-mails that come in about treatments or doctor appointments are helpful; at other times, hearing about more deterioration, or about List-serv members joining the lung transplant list or passing away, is not what I need in that moment. For a long period of time I avoided e-mails from a celiac disease List-serv I was on because despite how many helpful, supportive posts were made, the negativity from people who were still quite angry they couldn’t eat certain favorite foods was too pervasive. I was grateful I had a health condition I could actually manage without pharmaceutical intervention—something I could not claim with my other health problems—and I didn’t find the anger productive.

  “I have a much broader sense of what is possible and practical for a person with my illness than I might have, and this has been very important to me,” Duncan Cross says. “My specific illness—Crohn’s disease—is embarrassing enough that it’s hard to meet people in real life who have it. Nobody really wants to talk about it with strangers. But online, we can protect ourselves with screen names and anonymity, which lets us talk more freely about our illness. And, of course, when I started blogging, I adopted a pseudonym for the same reason—so I could be more honest without worrying too much that this would end up being personally humiliating to me.”

  The possibilities that present themselves when patients not only have access to health information but access to each other and a vehicle through which they can organize are powerful. Cross offers an evocative analogy on this point: The interstate highway system was really important to the civil rights movement since it allowed African-Americans to move from city to city much more easily than they could on trains. That let them bring a lot of pressure to bear on specific locations, like Selma and Birmingham, in fairly short order. The highways let them act together, as a movement, in a way that was previously difficult or impossible. Now, through technology, patients separated by all sorts of boundaries—physical, cultural, emotional—are talking to each other and discussing how they can change their lives and, therefore, the world around them.

  From One to Many: Virtual Patient Advocacy

  We know patients use the Internet to find information and find other patients. However, the power of the Internet is more than the individual patient marshaling information and organizing caregivers and supporters. Patient advocacy, which has gained momentum since the post–World War Two era, has reached a new zenith with the advent of the Internet and Health 2.0 technologies. From Facebook and Twitter pages for disease organizations to viral campaigns and fundraising to e-newsletters to keep large numbers of patients across the country and the globe informed, mobilization that once meant sit-ins and protests now often takes place virtually. However, such mainstream accessibility also comes with a caveat: information shared online must be accurate and reliable.

  It is a question we grapple with often in my science writing courses, when we debate popular versus scholarly sources or discuss why Wikipedia might serve as a resource that gives context but would not work as a scholarly source in a research paper. We probe the different purposes of writing: the personal, narrative voice that te
lls a story; the objective explanation of research methodology; the analytical literature review; and more. As a patient constantly tethered to my laptop, I know the importance of evaluating sources, particularly when it comes to health information. As a nonfiction writer, I know that sifting through articles and books and sourcing reference lists for other credible resources is an indispensable part of the job. I bring these experiences to bear when I tell my students that the access we have to information is an incredible opportunity, but it puts more onus on us as readers to think critically about the source, the authors, the agenda, and the validity of the information. This same analysis applies to online disease and patient advocacy groups.

  “Online disease-specific groups can provide enormous support for patients in dealing with the medical and emotional chaos a chronic condition brings into their lives. It can be enormously reassuring to learn that others have had similar experiences,” says Dr. Gwenn Schurgin O’Keefe, a practicing pediatrician who is actively engaged with Health 2.0 technologies. Through her website Pediatrics Now, she maintains a regular blog and sends out e-newsletters on parenting matters and children’s health. She knows firsthand the potential of the Web in terms of disseminating useful information, but she worries that people might not always give the information they find the thorough analysis it requires.

  “It is much easier to get information and communicate with patients with today’s Health 2.0 systems. However, patients have access to not just reliable information online but unreliable information. It is very easy for them to get misled, confused and become distrusting of health care because of the information they read online,” says Dr. Gwenn, as she is referred to on the Internet. This is something that can be exacerbated when it comes to patient groups. Despite its many applications, social media can have what Dr. Gwenn calls a herd mentality, where the voice with the largest sway isn’t always correctly informed.

  Imagine patients in a particularly marginalized health community, like chronic Lyme or fibromyalgia, who do not feel supported or empowered by the mainstream medical community, and it is easy to see how much more influence peer commentary can have. Leah Roman, who has a master’s degree in public health with a special interest in health communication and education, says people are extremely passionate about health topics and that gets magnified when patients are dealing with unknown conditions. Finding a network of support or like-minded patients who understand a patient’s suffering can make an impersonal experience intimate, and out of that personal connection can come urgency and advocacy. “It’s funny how that little bit of feeling included lifts spirits … being online does band people together, whichever side they’re fighting,” she says.

  “I always advocate using these [online disease] sites for emotional support and to learn where to find the best care and treatments but to rely on health care professionals to get answers about medications and treatments, not empowered patients or other interested, but savvy, posters,” says Dr. Gwenn. “Similarly, there is danger in these groups as the people expressing opinions are not physicians but people with opinions. It is important that people spending time on these sites realize that interpreting a person’s experience with a treatment or medication is complicated and to be critical of evaluating opinions stated on these sites in light of their own experience.”

  It is a challenging situation, since the pull of that emotional connection and personal experience is such a gripping one. My four-year struggle with infertility, a complication of my genetic lung disease, speaks to this. While I always talked with my doctor about specific tests, medications, and results, those informational conversations only gave me part of what I was looking for: the objective, quantifiable aspects of my health status. What I really craved, and what was often much more helpful, were the experiences of other infertility patients. I wanted to hear how they dealt with loss and disappointment, how they kept going despite the doubt and sadness. I wanted to know what options they were considering, and why. It was my doctor’s expertise and my own results that dictated how we approached infertility, but it was the chorus of voices I read and the collective wisdom compiled online that satisfied my emotional needs.

  Like many patient communities before them, patients with Lyme disease have banded together, pushing for more coherent policies toward diagnosing and treating it, building awareness, and increasing acceptance by the mainstream medical establishment. Lyme warriors, as some are referred to, share symptoms and treatments and advocate for more recognition of their long-term illness. Groups like Time for Lyme and many others are involved in the push for more comprehensive guidelines for diagnosing and treating Lyme that are free from conflict of interest. If Kairol Rosenthal’s definition of “slacktivism,” where mouse clicks and link-sharing replace meaningful engagement in a cause, is one end of the advocacy spectrum, then this type of mobilization belongs decidedly at the other. The disagreement over diagnosis and treatment of chronic Lyme positions patients against individual physicians and Lyme-literate physicians against physicians who do not believe chronic Lyme exists, and it also positions the strong patient advocacy movement and all those who are caught up in it against the medical establishment itself.

  New York Times reporter David Grann writes, “The rise of the Lyme disease movement—a populist torrent fueled by mass communication on the Internet as well as by cost-cutting insurance companies and bureaucratic HMO’s—has become a prototype of the modern medical lobby … There have been lawsuits, investigations, medical suspensions, demonstrations, even death threats.”20 Patient advocacy that we’ve seen in decades prior tended to focus on better treatment and more research. Since conflicts of interest and dismissiveness are primary motivations for many Lyme activists, the focus of some of the most strident activism is against the medical establishment itself. Where women’s health advocates saw a paternalistic, hierarchical arena, Lyme activists see a corrupt institution that cannot undertake the type of research they need. Instead, some have opted to pursue their own research. The most notable example of this is the Lyme Disease Foundation, which until it closed down in 2012, published its own journal, ran its own conferences, funded its own research, and had its own experts who weighed in with their preferred treatments.21 Part of their success in spreading their message and garnering increased support came from the Internet—personal blogs, smaller, more local and state Lyme groups, other nonprofits, and other general-illness and advocacy sites that cross-promoted links and resources.

  “I think that patient advocacy groups exist because our health care system is broken. There are many tragic stories of patients harmed by mis-diagnosis, neglect, or layers of bureaucracy—and it’s wonderful that they and their loved ones are fighting so that others don’t share a similar fate,” Dr. Val Jones says. In many ways, her observation makes sense. If the system weren’t flawed, the women’s health movement wouldn’t have needed to upend the traditional paternalistic relationship between patient and physician. If the system weren’t flawed, early HIV/AIDS activists wouldn’t have had to fight so hard for the triple-drug cocktail, or people struggling with illness wouldn’t have to face lack of insurance on top of their health crises. If it weren’t flawed, then patients like Britta Bloomquist and so many others with Lyme disease and similarly fraught diagnoses wouldn’t feel so much of their health narrative is framed within a two-sided story—us (patients and those sympathetic to their plight) versus them (the rest of the medical establishment).

  However, Jones thinks that advocacy groups sometimes engage in what she describes as “misplaced passion”: they mean to protect and empower others with their actions, but when they rely on false hypotheses, they can do more harm than good. She points to the autism community and the debate over the role of vaccinations in causing autism as a poignant example. Like Lyme disease, the situation surrounding autism and vaccines is a dense, complicated story, and like Lyme disease, it is the subject of many books, articles, blog posts, and impassioned arguments. The point here is not to rete
ll that complex narrative, nor to sift through possible causes of autism. Rather, it is to look at autism within the specific context of how social media and the Internet influences patient advocacy and information sharing.

  This movement is particularly intriguing since it bookends the trajectory of modern-day chronic disease: vaccinations quelled infectious diseases in post–World War Two America and paved the way for chronic diseases to emerge as significant public health and social issues. Decades later, without the looming threat of diseases like polio or smallpox, for some the pendulum has shifted. On one side are the doctors, researchers, and parents who endorse childhood vaccinations as important components of public health. On the other are those who are skeptical of the alliance between the government, the medical establishment, and the pharmaceutical companies who produce vaccines, which the skeptics believe are not made safely or dosed safely.

  Nowhere is the debate about vaccines and autism as heated—and, at times, vitriolic—as online, where parenting sites, blogs, nonprofit sites, and medical and public health sites are rife with comments, opinions, and dissatisfaction. I try to imagine advocacy against vaccines and for more effective treatments for children with autism taking place in another time and context, without the immediacy and reach of social media, and it looks much different. For so many parents and advocates, the advocacy journey literally begins when they walk home from the physician’s office and start researching autism online.