Breast cancer forced many of the participants to reveal a level of vulnerability and potential dependency in a public and undesirable way. Cancer disrupted all those invisible responsibilities and work that women perform to keep things going in families and relationships. Prior to their diagnosis, many of these women led independent busy lives. Cancer had the potential to make them dependent on others in ways that felt unfamiliar or heightened their sense of vulnerability and anxiety. A 49-year-old African American woman diagnosed with Stage II breast cancer tried to appear strong but stated:
That was tearing me up. “Oh I'm OK, Oh I'm fine.” Even though I wasn't. Then I finally just told them I don't feel good. And I stopped pretending, because that was tearing me apart trying to be physically strong. I couldn't be emotionally strong. I couldn't do both.
Hochschild, in the context of work relationships, discussed how people become actively alienated from themselves when they must project certain emotions publicly but feel entirely different emotions internally [23
]. In the case of the participant above, “pretending” to be emotionally strong was her initial and primary strategy but that failed when she could no longer reconcile the external, projected, self of strength at the expense of her integrity and authentic feelings, which differed considerably.
In our sample, we noticed that the situation of breast cancer for many women created an opportunity to increase their emotional capital [29
]. When women disclosed honestly about how they felt without calculated strategies to limit or manage the emotions of others, their disclosure allowed them to invest more deeply in themselves and their relationships. In fact, we found that women who did not manage the feelings of others at the expense of their own feelings and who openly disclosed to others were often met with unexpected support. Increased emotional capital often happened when survivors honestly disclosed their vulnerable feelings, which meant that they did not have to be alone during this critical time in their lives.
Those who self-disclosed to others also needed to be willing to receive support—sometimes in surprising ways and from unexpected corners. Often, they were surprised by how others, such as family members, friends, and coworkers, reacted with strength, compassion, and support. Spontaneous self-disclosing to others meant enlisting others for both emotional and tangible forms of support. Spontaneously disclosing to one's personal network often meant that there was a response (sometimes a flood) of support by others. Friends, acquaintances, and family felt compelled to provide some type of support. For many, spontaneous self-disclosures of their breast cancer brought unexpected sources of support, strengthened existing ties with others and created new friendships with others. A Caucasian 45-year-old Stage II breast cancer survivor stated her surprise at the support she received:
Never—I mean I had never in my life, it brought me to my knees in gratitude, in prayer, in thanks, in the human spirit and the generosity and what people did for me and my children for that year. Did I see anything negative? No. I had strangers—I mean I became friends with strangers who are now close friends of mine. People I didn't know—I'm like, “Oh yeah I think I've heard of you,”—who showed up at my door with meals, who drove my children places, who uh sent their housekeepers over to clean my house, who gave me airline tickets to fly where I needed to go to my sister's side. I mean yeah. Nothing negative.
Many respondents talked about the need to just “put it out there” and that once they disclosed, without investing much time in managing the feelings of others, people automatically showed concern and gave back anyway they could. An African American Stage II survivor discussed what it was like to finally talk about her diagnosis:
When you're closed up or just in a knot and thinking' that you're the only one that has this ugly disease you need to talk about it. Because it'll drive you, it'll drive you to just, when I first heard it, and I, I didn't I didn't think at all. I didn't think. All I wanted to do was take some pills. I just wanted to go to sleep. I wanted to put myself out of my misery. But as the days kept going, you know, you, you, you it goes behind you. So, it's the initial hearing of the word, the big ugly “C” word, and start doing. Don't stay closed up in the bed in the room. Talk about it. And you know, you would be surprised how many people will call you and let you know, you have our support. What do you want me to do? Blah, blah, blah ya' know? And I had that. I still get it to this day.
As one respondent stated, “99% of people are caring people.” Because of their breast cancer, almost all of the respondents reported that they experienced support that they had not expected to receive. The implications of telling someone signaled the opportunity for reciprocity: that help would be enlisted and received. Additionally, the experience of disclosing often allowed these participants to see (sometimes consciously for the first time) how large their social networks actually were. It defied and challenged the American individualist notion of self-reliance at all costs and the assumption that survivors wanted isolation and privacy. A 47-year-old Mexican American woman with Stage II breast cancer talked about how she was surprised that acquaintances she did not know well offered support.
It was shocking to find out that people care. The lady next door lost a parent to breast cancer and was so sorry to hear about my breast cancer. She would offer food and would just come by. Oh my God, it was just amazing. I've had bad neighbors in the past throughout my adult life, and so it was shocking to see that people can be nice.
Respondents found that most individuals were generally sympathetic and open to hearing about it. For the most part, respondents discussed how their families and friends did not turn away. Rather, many shared their experiences of someone that they knew having breast cancer.
Often, the crisis of a diagnosis brought friendships closer. Survivors realized that there were friends that they had never tapped into that they could rely on in this time of crisis. Often, the support received from friends was overwhelming and unanticipated. A Caucasian 54-year-old woman with Stage II breast cancer talked about the support she received:
My friends kept telling me, “You have to let us do things for you because that makes us feel better.” And so it was like I just made it a rule. Whatever anybody offers, let them do it even—I mean I got some really bizarre looking hats [laughs] but it's OK because—or my mom sent me all this stuff you know. And it was like I just would take everything and smile because I knew that you know it was like really important for them to do something so. I found a use for everything.
When women did not have to worry about managing other people's feelings, they focused on themselves, which sometimes was a revolutionary act for some women. The ability to focus on oneself was a process that defied traditional gendered norms of emotions and caretaking. And for many women, a breast cancer diagnosis meant investing in their emotional resources by interacting with loved ones who “showed up” and provided the support that they needed, which intensified and strengthened intimate relationships with family, spouses, and friends.
Although for the most part, women in this study who spontaneously disclosed received support, there were many who did not face engagement by others. Rather, they experienced a heightened, anxious response that was not always met with support. Several women discussed that there were some in their network that just could not take it and were not emotionally prepared for their disclosure of breast cancer. Due to fear, discomfort, other competing issues, or just being unaware of how to help a friend, partner, or coworker get through breast cancer, a few respondents discussed friends and family who drifted or stayed away. A Caucasian 50-year-old with Stage II breast cancer stated that after her disclosure her friends “they dropped off the face of the earth.”
The withdrawal of friends and family meant that there was no support given to them at a critical time in their lives. A 62-year-old African American woman with Stage I breast cancer said that in her network people withdrew: “They didn't understand what I was going through during treatment. Some people called and said they would be there, but they didn't know what to do.” Due to fear and the lack of education of the cancer experience, some respondents discussed how others were afraid. A 54-year-old African American with Stage II breast cancer stated that friends were so afraid and unable to provide support: “they stayed away from me like I had the plague My real feelings were that they thought I was going to die and they were detaching themselves.” A few respondents discussed how others because of fear or discomfort responded without emotion and minimized their diagnosis.
The purpose of this paper was to qualitatively examine the emotion work involved in self-disclosing a breast cancer diagnosis to family, friends, and acquaintances. As the findings of this paper demonstrate, disclosure of a breast cancer diagnosis to others is a difficult task, but it can also be an opportunity to strengthen and intensify the emotional capital in one's family and wider social network. Women do much of the emotion work in families, and when faced with a breast cancer diagnosis, their role shifts to involve managing the feelings of others at precisely the time when they need support themselves. Previous work on self-disclosure has demonstrated that it may have cultural, historical, and sociological contexts [18
]. We argue that the way women disclose may be related to cultural and gendered expectations and reflect changing social conditions in which the disclosure of cancer has become more acceptable. At the same time, the way disclosure is made can subsequently be used as opportunity to enlist and receive social support.
Women are socialized to be responsible for others in families, especially for those that are old and frail and the young [12
]. According to feminist scholars [12
], women are culturally expected to care for others and to be involved in “attentive love.” They are trained to care and to be concerned about the feelings of others over and above their own feelings and concerns. As a result, disclosing to others one's breast cancer has the potential to affect others emotional well-being. Some women perceive disclosure as another responsibility to manage the feelings of others, while other women use disclosure as an opportunity to allow other people to focus on and support them. The disclosure of breast cancer presents women with a series of paradoxical and gendered choices: “how can I ask for help from others when I see myself primarily as an emotional caregiver/manager?”“How can I care for myself during this process, if it comes at the expense of caring for others?”
The findings of this study show that managing others' emotions was a part of their own managed disclosure. Disclosures to close family members such as mothers, sons, and daughters are often thoroughly thought out and anticipated in detail – including the timing of when and how to tell. These disclosures are protective and not necessarily told spontaneously, but are often strategically managed so others will not feel overwhelmed by their condition. Self-disclosure was also heavily influenced by varying perceptions of stigma including breast cancer being a death sentence. As a result, women expressed a strong need to not appear vulnerable and dependent and to educate others through the process. Managing emotions meant a way of managing their own emotions and feelings of vulnerability. Even when they must deal with their own breast cancer diagnosis, women are still the glue holding everything together and having to appear like they have everything under control especially to members in their families.
Past research has shown that when cancer strikes families, women manage the emotions of their entire family [30
]. Prostate cancer patients have their female spouses available to do the emotions work of letting others know of their diagnosis [21
]. Mothers of children with cancer not only do more physical labor in their care-work but they also do more emotional work than their male spouses [30
]. At the same time, women involved in managing emotions for the benefit of others also experience high levels of emotional exhaustion, potential alienation from their own emotional selves, and emotional burn out [40
]. Although women are socialized to care for others even during the face of breast cancer, a balance between caring for oneself and others is of often a tension that women must negotiate in order to get through diagnosis and treatment [37
]. How a woman disclosed was often their first step towards taking care of themselves.
Paradoxically, spontaneous disclosures were sometimes met with unexpected help that followed. These disclosures were not managed to protect others from stigma or terror— but were free from holding back. With these spontaneous disclosures, respondents were surprised by the width and breadth of their social networks when such honest disclosure happened. They were surprised that others wanted to offer support. In the USA, there is an assumption that even during illness autonomy, privacy, individualism, and independence are valued [15
]. Even though the “American ideal” is about maintaining one's independence even in the face of illness, this study shows the benefits and opportunities of authenticity in disclosures and the interdependency, emotional strength, and support that followed these women who spontaneously disclosed. These spontaneous disclosures increased social networks and ultimately social support.
Involving and including others in one's illness may increase intimacy among friends and family. The sharing of emotional experiences made the illness experience accessible to others. By spontaneously disclosing to others, others were made more aware of a need and responded with social support. Several studies examining social networks, support, and breast cancer has shown that this having support is associated with better survival outcomes among women diagnosed with breast cancer [20
]. For a woman encountering a breast cancer diagnosis, an antecedent to being able to receive support is to tell others. However, there were a few women in this study, who after honestly disclosing, also encountered a dropping off of support and friendship. For these women disclosure can be viewed as a negative experience, however it can also be seen as “weeding out” the unsupportive people in their network. It can be viewed as “when you have cancer (or another serious illness) you find out who your friends really are”. However, lack of support and/or withdrawal can result in anger, depression, and other negative emotions for the women who disclosed.
Some women were afraid of the reactions of others in their support system and, therefore, did not disclose their illness. Oftentimes, those who withdrew were uncomfortable and unaware of how they could engage and support a loved one through a breast cancer diagnosis and treatment. For these women, especially those in racial or ethnic minority communities, there might be a need for increased information on how others can support women through their cancer experience. This reflects the need among some people, especially those in racial/ethnic minority communities for information on cancer in general including survival rates and the issue of shame and stigma as well as how others can be supportive.
This study has some limitations. The women were interviewed up to 4 years after diagnosis (although the mean was 2 years) and the experience of support and disclosure may have changed throughout their cancer experience. Despite these limitations, the findings in this paper have sociological implications for women with breast cancer and demonstrate the need for women to be involved in honest disclosure and less emotional management of others' feelings. There is also a need for education about the nature of the cancer experience among people who are not well educated about the treatment and consequences of cancer. This need may be even stronger among racial and ethnic minorities. Future studies could examine the role of cancer knowledge among others and their reactions to disclosure of a cancer diagnosis.