“A year ago, I crossed over to ‘the other side,’” Joyce, the spa employee, told me, “from the people who haven’t had cancer, to the people who have.” She changed in critical psychological, social, and economic ways: she now had a disease, and needed government support. “When I was first diagnosed, people who had cancer were disgusting and strange. Then, one day, I realized a lot of the people I know have cancer, and I’m on Medicaid.”
These men and women face decisions concerning not only their prior social worlds but new realms as well—genetic communities. Eventually, these individuals discover a wide range of organizations, both formal and informal. These groups can prove helpful, but also pose challenges. Stigma, rejection, and low knowledge of genetics in the outside world impel people to join groups of fellow patients. But fears of having to confront one’s disease further and see sicker patients as a result can mitigate against such involvements. Patient communities provide both advantages and disadvantages. How then do these individuals decide whether to participate in these genetic worlds, and how to do so?
Prior studies have suggested that psychosocial support groups can help patients with a wide variety of diseases, enhancing quality of life, social support, information, and hope.1,2,3 Yet many patients who might benefit from such support groups do not always use them, often because of being unaware of them.1,4,5 Support group participants tend to be female, young, and better educated.1,4,5,6 A few studies have suggested that compared to nonparticipants, participants have more anxiety,1,5 but less stress and depression.7,8
Recently, online communities have mushroomed, offering advantages and disadvantages.9 Websites can provide informational and emotional support,10 and be empowering.11 For good or bad, websites may also decrease physicians’ “information monopoly,”12 and challenge doctors’ expertise.13
But many questions remain as to how individuals decide whether and how involved to be in disease communities, how they experience these entities, and what difficulties, if any, they encounter.
I soon found that communities confronting genetic risks resemble those facing other kinds of illness, but also differ, due to several unique issues. As we have seen, people facing genetic risks may be completely healthy, and their disease may be exceedingly rare, and hence virtually unknown. Genetics may thus foster particular confusion, and these patient communities can thus play especially vital roles but also present several challenges.
Many individuals are surprised to learn that vast genetic communities exist. Unlike participants in many other types of social organizations—based on characteristics such as gender, ethnicity, or religion, of which one is aware since early childhood—interviewees have generally learned only recently that they are potential members of genetic groups. “You have no idea that the breast cancer community is there,” Joyce, the spa employee, said, “until you have a reason to find out.” Joining such a genetic community can then involve surprising and unplanned social transformations. One may feel distance from prior social worlds, but suddenly welcome into others.
Individuals may first learn of the existence of disease organizations when referred by a provider, but they then enter these communities to varying extents. Some find the disease—and hence these communities—too threatening. They may shun these associations, and not even wish to hear about them. As Benjamin, the engineer with Alpha, reported, “A subset don’t want to know anything about the disease: ‘Take me off the list. I don’t want to know about it.’ People are afraid they will get too depressed, angry, or afraid.” These groups can present tradeoffs between gaining useful knowledge and confronting emotional stress. Still, most individuals make more fine-grained decisions rather than being wholly in or out.
Given these obstacles, joining such communities may be gradual, facilitated by a guide. Occasionally, after diagnosis, patients may be contacted by a friend who has heard the news and then provides information about such communities. As Ori, the Israeli with breast cancer but no family history or mutation, said,
Other friends had cancer before me, and arranged for this phone call that I got. I wasn’t even looking for it. I didn’t want to hear from other people about it, or go to meetings. But it was very helpful. I would not have called them on my own.
She would not have looked for a disease community, but benefited once it contacted her.
A few patients asked a health care provider about such groups, and were then referred to them. “When the doctor first diagnosed me,” Ginger said about her Alpha, “I asked him, ‘Where can I find some information about Alpha?’ He said, ‘The Internet.’”
But overall, such physician referrals were uncommon. Instead, individuals generally had to find out about these communities on their own (e.g., though Google searches), or chance interactions, with little systematic input from anyone. Diagnoses may, after all, be new and secret, and patients may share the information with only a handful of providers and immediate kin.
THE FUNCTIONS OF GENETIC COMMUNITIES: WHAT THEY OFFER
These communities can offer a wide range of benefits—emotional, cognitive, social, and political. Patient groups provide valuable information, helping individuals and their families understand aspects of genetics from disease mechanisms to broader implications, addressing uncertainties and confusion.
Communities can offer input concerning testing, treatment, and finding medical experts. Especially for relatively rare diseases, these groups can assist in locating specialized or nearby physicians. Gilbert, the factory worker, commented,
At an Alpha conference, I discovered there was a group much closer to my home. Through them, I found another doctor. My previous doctor was great, but going to his city was . . . a hassle.
Patient organizations can also facilitate and encourage research, disseminating recruitment information and even cosponsoring studies, helping to establish disease registries or data banks.
These organizations can assist, too, in providing helpful information that doctors may in fact not know. Physicians have limited time, and may forget, undervalue, or feel embarrassed or uncomfortable discussing certain topics. Especially for rare diseases, patient organizations can fill in the gaps. Doctors may be particularly uncomfortable discussing diseases such as breast cancer and HD that involve taboo matters concerning breasts, ovaries, psychosis, sexuality, and death. The anonymity of online communities can facilitate discussion of such difficult areas.
Many of the topics discussed less by doctors than by disease communities concern side effects of treatment, about which physicians may feel embarrassed or guilty. Ori, the Israeli with breast cancer, said, “The staff simply didn’t tell me what to expect in terms of my hair falling out.”
These communities can facilitate discussions about taboo topics concerning the body, about which both patients and providers may feel uncomfortable. Denise, the banker, said about her breast cancer treatment:
In chemo, anal fissures are surprisingly common, but doctors don’t tell you that. People generally don’t talk about constipation. There is nothing like the constipation you get with chemo. I get a lot of private online messages, because I decided that women can ask me anything, since I never want anybody to have to go through what I did.
Discourse about these future problems can help prepare patients. As she suggests, mutual sharing and altruism can play key roles here.
These communities can provide information, too, about how to cope with the vagaries of these diseases—for example, of being at risk but untested or asymptomatic.
Large amounts of information may be available online, yet recently diagnosed individuals may still feel either uninformed or overwhelmed. “There’s so much confusion about genetics,” Linda, the art teacher, said. “I know information is somewhere out there for these smaller diseases, but you have to do the research yourself.”
Distributing and Arranging Treatment
As mentioned earlier, disease organizations may face decisions about what roles to adopt with regard to treatment access, and to what degree. In part because overall, genetic disorders are disproportionately rare—so-called orphan diseases—drug companies and researchers may devote relatively few resources to them. Thus, for example, Alpha organizations became actively involved in distributing Prolastin, though tensions ensued.
Treatment shortages raised other ethical and policy questions as well—for example, whether to advocate for widespread screening. If broader population screening for Alpha were instituted, the demand for Prolastin would have further increased without necessarily increasing the drug supply, forcing dilemmas of how to balance public health against individual treatment needs. These organizations faced challenges in confronting these decisions.
Genetic communities can also provide vital psychological and social benefits—from informal to formal, and direct to indirect. Usually, communities institute formal mechanisms that then also have informal benefits. For instance, peer-to-peer counseling can ultimately aid individuals involved on both sides of the interaction. Communities can foster altruism that can itself abet coping. As Jennifer added, “I’m a peer guide: I have to desensitize myself to the possibility that I may be on oxygen, so I talk to other Alphas about it.”
These groups can be particularly useful in reducing isolation. Especially for diseases associated with mutations that have low prevalence, individuals can feel alone and stigmatized. Joining a community of others who are similarly affected can thus counter these painful feelings. For Peter, the retired businessman leading an Alpha support group,
A benefit of the national meetings is: You get together, and see that people are concerned about Alpha. Doctors are working on it, and there is psychological support: You’re not the only one facing this.
Particularly for rare diseases that are less well-understood by the general public, such communities can be vital. Fellow patients comprehend the disease, while outsiders usually do not. In these communities patients do not need to explain and justify the illness. “People understand,” Dorothy said. Generally, outsiders don’t know that Alpha is genetic, and is not self-induced through smoking.
This support may be especially crucial for genetic diseases since affected patients share common experiences as well as intrinsic biological parts of themselves. In fact, they may all share a common ancestor. “We are literally all related,” Jennifer said about fellow Alphas. “It came from the Vikings. There is that feeling of common ethnic background: Northern Europeans.”
The journey from isolation to “belonging” can be incredibly powerful, producing a kind of high. Jennifer continued about her first meeting:
Until that morning, I had never met another Alpha. It was an electric excitement, mountain-top experience. A sense of belonging—camaraderie. I wasn’t alone. There were lots of people. Many of us feel like islands: I’m the only person in the world paddling this canoe.
Patients can guide and inspire each other, promulgating hope. Given possible bad prognoses, such optimism can be vital. Carol, who ignored her boyfriend’s opposition to prophylactic surgery, said, “I tell people, ‘My life is O.K. I’ve been there.’ That’s what I’m there for: to be an inspiration, so people will see me and say, ‘She looks O.K.’”
Inspiring other patients gives her an important sense of purpose.
Contact with others who have been sicker can also reduce despair and instill hope. These communities can uniquely fill these functions. Ori, with breast cancer, added,
It was helpful that I heard from someone who had 40 positive lymph nodes and survived. I only had nine. So, to her, my case was Mickey Mouse. I drew strength from her. It was a lifesaver.
THE STRUCTURES OF GENETIC COMMUNITIES
Genetic communities are not fixed entities, but vary and evolve over time. To perform the functions above, new groups and subgroups form, defined not only by diagnosis but age, race, ethnicity, socioeconomic status, and stage and presentation of disease.
Between the two extremes of only online and only in-person communication are many combinations. Interactions range from formal to informal, simultaneous to delayed, and small to large. These differences emerge in part due to type, prevalence, and stigma of disease, and tradeoffs between facilitating social interactions versus protecting privacy.
Some communities establish one-on-one buddy systems or hotlines to assist new members in person, on the telephone, or over the Internet. In response to fears of potential discrimination, anonymous support systems can let members communicate one-on-one without divulging any identifying information.
Yet the social dynamics can become complex. As Ori described,
I have a friend, but don’t know her personally. She’s part of an organization, and was hooked up with me as a peer. She, too, has gone through breast cancer and is Jewish, with eight children. She had genetic testing, but I didn’t ask her the results. In her Hasidic neighborhood, nobody knows that she even had breast cancer. They walk around in wigs anyway, and she was able to hide her illness from future mates—they arrange marriages. So I asked her, regarding Jewish values, how you go about not being up front with that issue. She said that if asked, you have to say; but if not asked, you don’t. People in the community ask a lot about Alzheimer’s, mental retardation, and cancer. So far, no one has asked her, because her children are not of marriage age. Now, one is 19, so it should come up soon.
Genetic communities can thus serve as a refuge from stigma. Subgroups can also form—based, for instance, on religion. Ori suggests as well the novel amorphous social category of a “friend” whom one doesn’t “know personally”—highlighting the complex definitions, responsibilities, and boundaries of such relationships.
Given primary concerns, communication on websites can require special registration and passwords. Isabelle, the social worker with breast cancer and a mutation, trying to decide about prophylactic mastectomies, said, “One section, for which you need a special password, is just for women who have had mastectomies: It’s photographs of reconstruction.”
In-person support groups are common, and can be very helpful, extending for years. Formal support groups often spawn ongoing informal friendships.
National or regional conferences further enable patients to meet, learn from, and interact with each other and researchers. These larger venues further strengthen senses of a broader community, including scientists as well.
Virtual Electronic Communities
Increasingly, however, genetic communities are becoming electronic and virtual, with online mechanisms varying from informational websites and posting boards, to live chat rooms. These formats are not mutually exclusive, but can interconnect. In-person interactions can also become virtual, and vice versa.
Particularly for rare diseases, online fora may be vital, since such disorders are uncommon in any one locale but accumulate nationally or internationally. For relatively more common but stigmatized conditions such as breast cancer, online communities can serve unique functions as well.
Web communication can also offer logistical benefits—for example, saving time. Yet the anonymity of online communication can erode trust in the quality of postings. The Internet can reach many, but web information can be unvetted and incorrect.
The relative newness of the web, the rapid evolution of science and treatment, and the fact that information can be posted anonymously all make the accuracy of material offered difficult to judge. “Early on, you don’t know anything, and are getting information,” observed Denise, the banker with breast cancer and a family history. “But you have no idea who is giving it to you, and how accurate it is.” To address this problem, these communities have frequently evolved informal self-corrective mechanisms to monitor quality. “If somebody posts bad information,” she continued, “other women write, ‘This is not the case. My doctors, in fact, say: don’t do that.’”
Online communities also require computer and Internet access and skills that, though increasing, are not universal. Limitations still exist related to age, education, sex, race, and ethnicity. Carol, the 43-year-old saleswoman with breast cancer, surgery, and a mutation, has “never done chat rooms. I don’t even know how.” Some seek to acquire these skills, though doing so is not always easy. “I’m just not a computer person,” said Wilma, the 54-year-old with breast cancer and bipolar disorder. “I’m just learning.”
HOW TO BE INVOLVED
Individuals face decisions of not only whether but how and to what degree to be involved. Patients choose activities based on varying needs and interests, intertwining their lives with these organizations in different ways.
As suggested earlier, individuals not only receive support but provide it to others, which itself can be rewarding and helpful. These communities often explicitly facilitate such volunteerism, which can potentially benefit one’s relatives, future descendants, and others.
Some volunteer to help manage these organizations. Patients who legally can’t work because they are on disability can nonetheless volunteer their services. Beatrice’s sister took early retirement, and offered to administer such an organization for free. These efforts provide valuable indirect economic support to these communities. “She retired early, and embarked on a part-time second career, doing a lot of volunteer stuff. She thought it was fate.”
Ethical claims can further fuel such reciprocity. “I profited a lot from what people had done,” Jennifer said about the Alpha community. “So I wanted to give something back.”
People may get involved in a disease organization because they have important skills to contribute, perceiving deficiencies that they can help remedy. Dorothy, the former TV producer, worked to help improve physician and public education about Alpha. “The organization had no PR,” she said. “I used to work for TV, and knew people. I thought: maybe I could do something. That’s how I got involved.”
Initially, after diagnosis, individuals may try out different activities to see which prove most helpful, wholly rejecting certain engagements and choosing others. Gilbert, the factory worker, tried holistic healing for Alpha and concluded that it did not help him. “They were sitting there meditating with this holistic healer,” he said. “That’s just not my bag.”
Participating in Research
Genetic communities also sponsor and promote research, helping to recruit participants. Once informed of these studies, individuals may decide to participate for altruistic reasons—to help other patients. Yet engagement in genetics research may differ from that in other disorders in stemming, potentially, not merely from abstract altruism. The results could benefit not only oneself and strangers, but one’s own direct kin—present and future. “What if one of my sister’s kids ends up having HD?” Chloe, the untested and asymptomatic 28-year-old secretary, wondered. “Maybe doing research will help them.”
A version of therapeutic misconception may extend to one’s relatives. While therapeutic misconception suggests that individuals often feel that they themselves will benefit from research when that is not the case,14 with genetics many patients assume that research participation may not help them at all but will aid the next generation. This sense of gain to others may represent hope, rather than misconception, but can shift the risk-benefit calculus for a study, with individuals, as a result, at times accepting more risk than they otherwise would. These individuals may thus view research participation differently than do institutional review boards (or IRBs) that oversee research and are often more protectionist. Bill, the salesman without the HD mutation who cares for his affected brother, added,
My brother says: “I’ll be a guinea pig. Inject me. Stick me. Do whatever you got to do. Maybe it helps me. If not, maybe it’ll help my family. I don’t think anything’s going to cure me, but if I could find something that will help someone else, why not?”
Such altruistic participation in research can also strengthen a sense of meaning and purpose in one’s life. These links to future beneficiaries may thus also increase rates of research participation.
Many of these patients also appeared more willing than IRBs to allow researchers to conduct future as-yet-undetermined genetic tests on biological specimens. IRBs tend to hesitate to allow participants to donate samples without knowing what exactly will be done with them. But the individuals here tend to value potential benefits to their relatives and descendants, which IRBs might not consider. As Albert, the policeman with the HD mutation, explained,
My mother died, and her body is in the Midwest somewhere, just sitting there. Does that bother me? No. If they think it can help research down the road, I don’t mind. My blood was taken because they need research, and it goes off somewhere.
He is not sure where or why, but this ignorance does not perturb him.
Many interviewees acknowledge potential risks, including possible violation of confidentiality, but feel that the benefits to other individuals outweigh these concerns. Benjamin, for example, the engineer with Alpha, gave his blood to a DNA databank.
A lot of people said, “Why are you doing this?” and need more protection so their names don’t get out. They want to remain anonymous. That’s just not me. This DNA bank might help. I don’t think it can hurt. I suppose the information could be compromised, but it wouldn’t bother me. I suppose somebody could make a lot of money on it, and steal it. But I trust them.
He considered, weighed, and ultimately dismissed these objections. If a company might profit financially from such research, he would still participate, but would wish that any therapeutic benefits would then be inexpensively distributed. “If they said, ‘We’re going to make a lot of money out of it,’ I’d want a commitment that they’re going to try to make it readily available.”
Simone, the bookkeeper with the HD mutation who learned of the disease only after getting engaged, saw research participation as an ethical mandate of community members and was angry at individuals, including even those in her own family, who declined.
I was annoyed at my father for not wanting to get involved. That was very selfish. If you have HD, and there’s nothing you can do, at least get involved in research and do your own little bit.
Nonetheless, not everyone wants to participate in studies. Patty, for instance, who pushes her risk “under a rug,” “would not volunteer, because I don’t want to be a guinea pig. And I react differently than a lot of people.” She cites two reasons—not wanting to be experimented on, and being biologically atypical. Gauging herself in her body sculpting class, the possibility of having HD also still terrifies her. For her, these fears and potential risks outweigh potential community benefits, loyalties, or needs.
Given the relative newness, the miscomprehension, and the potential discrimination of genetics, many organizations also develop and propose public policy. But here, too, challenges arise. Such policies usually concern Medicare, Medicaid, insurance, and treatment.
Genetic communities can exert pressure on professional and governmental leaders, pushing for a variety of interventions to help patients, and motivating members to become more politically active. But these organizations may have only limited or uncertain power and effectiveness. Nonetheless, such activities can feel very gratifying and empowering. “I picked up the political stuff as a challenge,” Jennifer, with Alpha, said. “It really felt good to contribute in that way. It strengthens me.” Mounting economic pressures can further the political activities and needs of these organizations and individuals. As Dorothy, the former TV producer, added, “We had our first advocacy day in Washington. Medicare was going to cut medication payments. We got an exemption on Prolastin. Only three drugs got it. That was exciting!” Such activities aimed at shaping legislation can serve to help both oneself, psychologically, and the organization.
These communities can also push to change public images about diseases. Dorothy added,
We can’t use the term “A1AD.” No one knows it, so no one cares. We came up with the name “Alpha,” and use it in public information. And we’ve got to get rid of self-destructive terminology. We can’t use the words emphysema or cirrhosis. People think: smoking and alcohol—you’ve done it to yourself.
Thus, organizations can help reverse negative images of a diagnosis helping patients and the broader public. Groups can also alter stereotypes of who gets a disease. As Bonnie, the 24-year-old without testing or symptoms whose sister had breast cancer, said,
A lot of breast cancer organizations give an image that it’s only an older woman’s disease. One organization doesn’t, and says it can happen at any age: 17 and 18. It’s important to get rid of that other image.
Yet despite these needs, individuals vary dramatically in how involved in these ways they want to be, or feel comfortable being. Patients may agree with the legislative goals, but not feel at ease “going public” or being politically engaged. Such overt activities may be especially difficult for HD, given its psychiatric symptoms and potentially higher stigma.
Patients must also balance a sense of obligation to the group against competing demands and preferences (e.g., desires for solitude). “I’m more quiet, not so active,” said Rhonda, the nurse with breast cancer and a mutation. “Except if I’m asked to call a newly diagnosed person.”
These men and women must decide, too, how much time to devote to the disease as opposed to other aspects of their lives. “I try not to make it my be-all and end-all,” Rhonda added. These limits may be based on these individuals’ own needs or those of their family versus those of non-kin. Some people strive to aid their own immediate family rather than the broader community. Smaller, tangible efforts may be more rewarding. In addition, certain people simply dislike meetings and groups. As Karl concluded, “The biggest help I can now be is personal: just helping my brother.”
Given these complex and competing issues, individuals vary in their community engagements, related to several factors, such as disease state. Serious or debilitating symptoms can thwart some or all of these endeavors, forcing hard choices.
Genetic communities can differ, too, based on aspects of each specific disorder. Psychiatric symptoms, for instance, can impair social interactions. Hence, individuals with HD may be less politically active, given cognitive and psychiatric problems and higher stigma. Wilma, with both breast cancer and bipolar disorder, compared the value and nature of the support groups for each of these diagnoses.
I get the mood disorder newsletter, and have gone to some lunches, but don’t care for their support groups. You sit around and get dragged down. But the breast cancer support group is very uplifting. We are just buddies: you want to see what my breast surgery looks like, I’ll show you. So we close the door, and I show you. With the mood disorder, a lot of the people have self-esteem problems, which I don’t.
Community involvements can reflect and shape identities to differing extents. Many want a community, but not an identity, or vice versa. Some people become integral parts of a disease community, which powerfully shapes their sense of self. Yet the boundaries between individuals and communities can be fluid, porous, or ambivalent. People face quandaries about how and where to erect boundaries. Karen, the lawyer with breast cancer, said,
Do I feel part of the breast cancer community or cancer community? Yes and no. I’ve done Race for the Cure, where survivors wear pink t-shirts and everyone else wears white. I always feel weird wearing a pink one. In some ways, it’s very nice: I can “out” myself. But I walked into a restaurant, and saw someone I knew.
She then had to explain why she was wearing that shirt.
As we saw earlier, illness can represent a whole or only a part of one’s life—giving meaning to as opposed to consuming one’s life. Even online, individuals make choices of how engaged to be. Denise, with breast cancer, bases her involvement on how helpful she thinks she can be. “I read message boards a lot, but don’t post anything unless somebody has a question that I know a lot about,” she said. Since she works for a bank that may read employees’ emails, she is extra-cautious.
Seeing Sicker Patients: Acceptance versus Denial
These communities can generate deep ambivalence when individuals observe sicker patients with the same illness. Sufferers are thrown together, fostering both bonds and tensions. Individuals range in the degrees to which they accept or minimize or deny their illness, affecting how much they want to participate. At times, anxieties and discomfort expressed themselves through humor. “You’re in an exclusive club,” Charles, the accountant, said, “that nobody wants to belong to, if they had a choice.”
Seeing more advanced cases of one’s own disease can be terrifying. Some people may even avoid going to clinics, because patients there may be sicker. Mary, with early symptoms of HD, said, “I don’t even like sitting in the waiting room, because I don’t want to see my future.”
Evidence of others’ treatment side effects can be disturbing, too. Jennifer, who described her first Alpha meeting as “a high,” nevertheless said, “People I met are not in very good shape now. I can only have so many death announcements around me.”
Observing others who are more or less sick can make one feel either better or worse about oneself. Healthier patients can stimulate depression and jealousy. Patients compare their relative degrees of illness, at times making themselves feel better, even if it represents schadenfreude—that is, based on the suffering of others. Awkwardness can result, as individuals may not be able to disguise their distress or glee. Sherry, the waitress with breast cancer but no family history or mutation, explained,
One woman in the group is not going to make it. She’s had three ovarian cancer surgeries, and got cancer again. I said, “I’ve had four breast surgeries.” She said, “You beat me. I’ll never feel sorry for myself again!” I thought, “But I’m going to make it.” Still, she got a lift from knowing she hadn’t had as many surgeries as me.
Individuals struggle with deciding when they have witnessed “too much” disease in others, and modulate their involvement, balancing benefits against psychological burdens. Relatively healthy, asymptomatic individuals at risk may shirk support groups because of fears of seeing worse symptoms. Such exposures may in fact feel psychologically harmful, forcing tradeoffs between support and fear. Patty, who sweeps her HD risk “under the rug,” said, “The support group is depressing, so I ignore it. The people there are really ill. It’s almost worse for me. I’d rather live in my own little world, than with these shattered lives.”
For patients with Alpha, immunocompromised from treatment, exposure to others can in fact exacerbate disease. Such patients may thus eschew these interactions even more. Betty, the designer with Alpha, does not go to “big meetings.” She is afraid of “getting a germ, traveling, being around strangers.”
Individuals may also be wary of fellow patients’ anger, fear, or depression. Others’ psychiatric symptoms can generate stress, with which patients might not cope well or directly. Frustrated patients may displace their rage onto others. As Sherry reported,
The first time I went to the yoga class through this breast cancer organization, two of the women started arguing over which way to place the mats. Then, I went to the clay class, and one woman made a one-and-a-half breasted woman, and started to cry.
Sherry stopped attending.
An Internet community, too, can force participants to confront stresses more than they want. Even a listserv can be upsetting. “On the e-list they do a lot of griping,” Jennifer said. “So I took my name off.”
Desires for Anonymity
Varying wishes for privacy and anonymity also shape subsequent decisions about community involvements. To join an organization can necessitate divulgence of personal information, mutations, disease, and other stigmatizing aspects of one’s life. People differ in how they weigh concerns about these risks to privacy against the possible benefits of engagement. On the one hand, concerns about privacy may be relatively low. Benjamin, the engineer who lost his job when his employer realized he could go on disability due to Alpha, acknowledged but accepted the costs of openness. “Everybody has things they want to keep private, but I’ve always been open,” he said. “I have a big mouth, shoot from the hip, and tell you what I think. Politically, it’s not too savvy.”
Instead, as indicated earlier, many others seek anonymity. Even Denise, the banker who discussed on the web anal fissures she received from chemotherapy, draws a line, remaining unidentified in these interchanges. Discomfort and embarrassment about anal lesions may also contribute to physician silence on the topic. She weighs altruistic sharing against desires to maintain privacy and avoid shame: “When anybody wanted detailed information about anal fissures, I never gave out my phone number or screen name.”
Such online anonymity provides both benefits and limitations. Nonidentifiability has advantages in facilitating discussions of taboo topics. Denise continued, “Discussion boards are great because you’re anonymous, and can tell people the real down and dirty side of it: You make up a name.”
Outside the web, one may not know these other persons, thereby preserving confidentiality. Other individuals make finer-grained choices of where and when exactly to draw the line, identifying themselves in some, but not all, types of communication.
Yet even with promises of anonymity, online interactions about genetic risk may feel too personal. Isabelle, the social worker with breast cancer and a mutation, said,
Being anonymous was good about the Internet—you can go to a message board and have tons of people in your same situation. Yet how much are you going to expose yourself? I go there once in a while. I look at research studies, but don’t converse with anyone. I’m not in touch with any people specifically. I don’t go to chats. I subscribe to a breast cancer network listserv. It sends you news. I once went to a chat to see what it was like. A few people seemed very nice, but it’s just not my thing. It’s too personal.
Over time, maintaining anonymity while communicating about deeply personal experiences can also become increasingly hard. Threats to confidentiality can occur from not only fellow website visitors, but others. As we saw earlier, men and women face challenges at the workplace, sending or receiving emails about medical issues, and even visiting disease websites. As Denise, the banker, reported, “Everything you write can go through the company’s Compliance Division.”
Responsibilities to Communities
Patients also have to balance obligations to the community versus to themselves and other aspects of their lives. “I do the support group, but it’s not my life,” explained Rhonda, the nurse with breast cancer and a mutation. “They did help me when I was going through it, so it’s the least I could do.”
However, this sense of obligation can clash with other personal needs, and individuals may wish at a certain point to reduce their voluntarism, which can consume substantial amounts of time. Patients must then decide how to weigh time with these communities against other priorities. But clear limits can be difficult to erect and maintain. Rhonda continued, “Sometimes I feel: why do I put myself out like this? If I get busy, I think, ‘I have too much going on!’”
Individuals confront dilemmas of how long to remain involved after initial diagnosis. They can feel threatened, seeing sicker patients, yet feel badly deserting them. Karen, the lawyer, said,
How much cancer is too much cancer? I’m debating whether to stop. I didn’t have a real desire to continue with those people. But I still go once a week. Some of the most interesting things that have happened to me have been seeing the different ways in which people die.
Both within and between groups, organizational missions can conflict, creating stress. Members may view differently the nature or function of any one organization, leading to clashes. Generally, the majority of members, or the antecedent mission of the group, prevail. But given individual and organizational shifts, members of an association may also self-select to stay or not. Jennifer, who felt the Alpha meeting was “a high,” later took her name off the e-list and became more aware of the nuanced pros and cons of such organizations.
The support group has become important to some people, and not to others. Some come once or twice, are very angry, and attack people who don’t agree with them. That’s not how I see this group.
For these organizations, multiple foci and agenda can produce inter-group synergy, complementarity, and linkages or tension. One organization may promote research, while another may establish support groups. They can collaborate, mutually assisting each other, or fight for resources. “Two organizations used to bicker,” Dorothy elaborated. “Now, they are joined at the hip.”
Even groups addressing the same disease can end up battling. Benjamin said about such conflicts regarding Alpha,
A couple of organizations seem to be butting heads. One was more focused on supporting the individual, the other on finding a cure. Now, one is severely in debt. If one didn’t help, it was killing the other. If it did help, it was taking over.
Other sociodemographic issues can produce strains as well. For instance, questions emerge as to whether some support groups may too exclusively represent certain patient characteristics—age, ethnicity, or social class. Hilda, the African American home health aide with breast cancer, questioned the diversity, outreach, and perceived openness of some organizations, including medical institutions. “At otherhospitals, people come in and talk to you,” she reported. “When I was in the last hospital, nobody did that. They don’t give support, or books. Nobody comes, or tries to help.”
Genetic Communities versus the Outside World
Genetic communities can have complex, complementary, or conflictual relationships with outsiders as well. Patients may observe tensions between these communities and unaffected individuals, including mutation-free family members. Outsiders can either encourage or discourage community engagements, and pressure patients to increase or decrease these activities. External observers may not appreciate the benefits of these communities and may be wary or antagonistic. Jan’s sister told her to focus less on breast cancer groups.
My sister cannot comprehend anything I have gone through. She says, “You’re so boring, all you do is go to breast cancer seminars. Everything is: cancer. Get a life!” I tried to explain. She said I’ve just given up. She can’t understand that this is my life. When I was diagnosed, she couldn’t help me. She said, “Oh my God, it’s going to happen to me next!”
This sister’s reaction may thus result from her own anxieties, but nonetheless creates stress.
Changes Over Time
Over months or years, interactions with a disease community can evolve. Many people become involved initially and then less so over time. Yet these temporal alterations are not always wholly planned or controllable; relationships can take on a life of their own. Ori said about a telephone buddy with whom a patient organization had paired her:
At the beginning, we would call each other every week, sometimes twice a week. Then I felt less need to call, and she’d leave me alone. In the beginning, we talked at least 50 or 60 times. Now, it’s monthly, or every two months. She stays on the phone until I want to get off. That’s taxing, because I don’t know when it’s polite to get off . . . “Oh, how are the kids?”
Roles can change from assigned patient “buddies” to “friends,” yet questions then emerge as to responsibilities in these new relationships. Beyond a certain point, individuals may in fact continue difficult involvements, and must then balance these against other needs. Betty said, regarding Alpha,
I liked going to support groups, but then had enough. It’s probably more detrimental to me to be surrounded by this, than not. Recently, a woman in the group had a lung transplant. She seemed good, but then did badly and died. She was forty-something.
Individuals may change not only what activities they engage in but how they do so. For instance, individuals may initially enter online groups anonymously, but subsequently choose to reveal their identities. Dilemmas then surface of whether and how to transition from unnamed to named, and what to do if these decisions are not wholly mutual. Individuals can wrestle with the pros and cons, feeling uncertain. Denise, the banker, said,
I go to Internet support sites, but not support groups. I was very active on the boards, and we had a get-together at a restaurant. People were talking about who’s coming. I would watch that thread, but not put anything down. I wasn’t going to commit. That morning, it was raining. I really wanted to go, but was afraid people would look really sick. I looked pretty healthy. A friend said, “You can always leave.” So, I went. We had so much fun. I never laughed so hard. I didn’t have my wig anymore at that point, but the women still in wigs all exchanged them. People who had brown hair were putting on the blonde wigs; the long wig for short wigs. A couple of women had their husbands there, who put on the wigs. Then, everybody took their wigs off at once.
Yet even here, tensions between identity and anonymity quickly arose. These individuals each suddenly had to decide how to proceed.
In the restaurant, we decided to have name tags. Initially, it was just going to be pseudonyms, but everybody ended up writing their real name. A lot of the pseudonyms were nicknames they had as children, or their cats’ or children’s name: like, “David’s mom” or “Sunshine.” It’s part of people’s identity—just not their given name.
Over time, groups may evolve and develop new functions or structures. Specialized organizations can form for particular niches—for example, for young breast cancer survivors. As Bonnie, the 24-year-old, reported: “On other organizations’ websites, I didn’t see pictures of 22-year-olds. I couldn’t relate to that, or say, ‘Wow, that’s me.’” Such organizations can sprout spontaneously from the ground up. She continued,
A group of friends found a support system. We’re professionals. One’s a lawyer. They’re not just housewives with nothing better to do. It became a network system. “You know who else has cancer? My coworker.”
This subgroup was based in part on socioeconomic status, and expanded over time as each new member knew other potential members, creating a network.
As suggested, genetic communities can help patients cope and make health decisions regarding testing, treatment, disclosure, and research participation. These groups affect these decisions both directly and indirectly. For instance, genetic communities can help one accept and disclose one’s disease more widely. Jennifer explained, “Since I have become comfortable in the Alpha community, I now tell everyone. The first Alpha-1 conference I went to, everyone wore a little button. ‘Alpha-What?’”
Communities can provide language and vocabulary for disclosing and understanding the disease—even specifics of how to talk about it. Further disclosure can assist in coping and strengthening the degrees to which patients incorporate their genetic risk into their sense of identity. Jennifer added,
I learned how to talk about it in a way that people can handle. I say I have “genetic emphysema.” That’s better than “Alpha-1 Antitrypsin Deficiency.” I don’t want to get into a whole big conversation with somebody who isn’t going to understand.
These men and women reveal how genetic communities range widely in structures and functions, with groupings varying from formal to informal, online to in-person, large to small, anonymous to public, and rigid to fluid. Prior research has suggested several advantages and disadvantages to patient groups,9 but the individuals here highlight areas that have received less attention, concerning how patients actually make decisions about these possible involvements, what tensions they face, and how they often struggle in weighing these and vary in doing so over time. Patients confront choices between in-person support groups, one-on-one phone interactions, online chat rooms, and message boards—each with pros and cons, and complex relationships to each other. People differ in when and how they enter these communities, how involved they become, and for how long they remain. These individuals and communities grapple with how to weigh anonymity versus the need for information, and how to assess whom to trust. Anonymity can make the quality of available online information hard to judge. As a result, over time, these communities evolve, with both individuals and organizations shifting to meet changing needs, modulating their activities. Groups form anew or refocus.
Involvement in these communities requires a certain degree of acceptance—as opposed to denial or minimization—that these engagements can in turn further enhance. Similarly, participation can beget added involvement, creating a positive feedback loop. These patients suggest a process of socialization as they enter and become part of these groups, altering both their inner and outer worlds—their identities and social networks.
Yet individuals may enter too late, or leave too early, reducing the benefit they may otherwise accrue. Individuals may also reach a point at which they perceive that the harms (seeing sicker patients) outweigh the benefits (support). They may weigh, too, perceived moral responsibilities to aid others against individual psychological costs.
Given at-risk relatives, patients may view the risks and benefits of research participation differently when confronting diseases that are strongly associated with genetic markers as opposed to other disorders. Providers, patients, family members, and others need to know about these community sources of potential support. Broad education is vital, since individuals may be unaware that they are at risk and may be able to benefit from these organizations. Clinicians should also be aware of these complex issues, in order to assist patients and family members in making decisions about these groups, which can potentially affect testing, treatment, and quality of life.
Further efforts are needed to better understand how communities might most assist individuals, and individuals might make most use of these groups. Past studies have tended to focus on just one type of organization rather than the wide assortment from which people choose. Thus while some investigators have compared participants and nonparticipants of a particular type of group, future research can also examine participants of different kinds of groups (e.g., online versus in-person). Differences may emerge due to logistics and other issues.
Moreover, communities and clinicians can potentially work better together, yet it is unclear how physicians view and interface with these associations—whether, when, and how often providers refer patients to such organizations. Dissatisfied patients, more than others, may promulgate their opinions in such groups.
On-line, given rapidly evolving scientific understandings, websites face challenges in optimizing both the quality and anonymity of postings. Needs exist for quality control—for mechanisms to correct any errors. Consumer, provider, and governmental groups or standards can potentially help. As the amount of genetic information expands, physicians, either individually or through professional bodies or governmental agencies, could monitor websites and help them provide the most accurate, user-friendly information.
These men and women thus illuminate the complex tensions within genetic and other communities that many of us may one day encounter.