explained that cancer brought a multitude of emotions that endured over the course of their illness including, but not limited to, fear; anxiety; depression; a sense of loss; isolation; anger; and frustration. Some women reported efforts to confront these emotions with their oncologists or ask for referral to services that might be able to help; however, few found that oncologists were adequately responsive to these needs. Some women spoke of well-intentioned clinicians who reassured them of the ‘normalcy’ of psychological and emotional distress following a cancer diagnosis as well as those who emphasized the importance of a positive and optimistic outlook. However, very few women spoke of providers who referred them to psychologists, social workers, and/or cancer support groups to help cope with their emotional challenges:
P2: We’ve been brought up in a culture, and I’m sure it’s changing, that doctor knows best and you just follow him and do what he says. If you get the sense that this [psychological/emotional distress] is normal or not important, then it must be so. But doctor doesn’t always know best, I know that now!
Other women spoke about the tendency of their medical care team to confuse familial support for emotional care, rendering their claims to emotional/psychological care even more fragile. In review of the photograph below, P2 explains that despite experiencing tremendous support from friends, family and her health care team (all represented in the stick figures captured in
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unwavering support, these people could not truly understand what it was like to have breast cancer, to suffer with treatment related side-effects (in her case, pain) and stigmatizing stares, as well as what it is like to make difficult decisions about treatment. In turn, her emotional care needs remained unmet.
Similar to P2, several women in the study highlighted the salient difference between having a support network and having access to emotional care supports. Indeed, nearly all of the women in this study explained that they felt a need to be emotionally strong for their loved ones and that it was important for them to not further “burden” family and friends with their emotional
struggles. In an effort to protect loved ones, some women described concealing their emotional challenges, which often left them feeling isolated and alone – even when they were surrounded by large networks of supportive others:
P8: I need to be strong for THEM. I was protecting THEM. My family is in South America, so I would talk to them over the phone and they would say “How are you doing?” and I would say “Oh, I’m doing fine and everything is fine” and then after talking to them I would start crying. I remember sitting on the floor against the wall, crying inconsolably, thinking I’m NOT fine. I’m terrified, I have anxiety, I am depressed. Am I going to be able to make it? Am I going to survive? If I don’t survive, what is going to happen to them? I am the economic support for them, I cannot die. I CANNOT die. This was adding to my fear and worry. In the process of protecting them, I realized there was no one to care for me.
Many women foregrounded the need to provide emotional care to loved ones in order to protect them from the distress of their illness. For instance, P11 recounts spending “a lot of time
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[cancer diagnosis] meant for me.” These findings suggest that women’s claims to emotional care for themselves are often fragile, and that this might be particularly true for women with families who are often tasked with maintaining care for themselves and others, and who may not receive necessary medical attention or referral due to the assumptions that familial support ensures emotional care.
Assistance with coming to terms with a cancer diagnosis along with the uncertainty it entails and of being given opportunities to connect with others who have been through a similar
circumstance were consistently cited as prominent unmet needs. ELLICSR was discussed by many women in this study as an alternate care environment that provided them with an safe and caring space where they could foster friendships with people who were living with, or had lived through cancer. The shared experience of cancer opened opportunities for empathy and
connectivity within the group, promoting an environment of compassion and acceptance. As P1 noted “Even though we only knew each other for a few weeks, we had more in common than we had with people whom we had known for a lifetime…It is a point of recognition where you stop and think [sigh of relief] ‘These people get me.’”
Having a place to go where they could connect with others facing similar circumstances was highly valued; affording them opportunities for debriefing and consciousness raising. Indeed, many women found comfort in shared discussions about their experiences and through the collective acknowledgement that their feelings of fear, anxiety, depression, and isolation were common and not suggestive of inadequacy or ‘abnormality’. Indeed, the connections that women built with others were discussed for the ways they promoted a sense of ‘normalcy’ and belonging during times where they described felling “stigmatized,” “abnormal,” and “broken.” The safe, empathetic, and caring nature of this environment encouraged open and honest emotional expression, permitting opportunities for sadness, anger, and vulnerability (as oppose to an expectation of positivity and cheerfulness) – emotions they often did not feel comfortable expressing in the hospital and home.
The emotional care received in interaction with cancer friends was perceived by most women to fill an important care gap; however, these relationships took on additional and nuanced
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lives. For instance, P4 described the lack of familial support she received and wanting to give up on treatment as a result. She explained that the emotional support and encouragement she
received from cancer friends was not only therapeutic and beneficial in addressing her emotional challenges, but it also gave her the confidence and motivation to carry on with treatment:
P4: They [her brother and sister-in-law] would just put me in the car and wave bye-bye and I would have to come home by myself [tears up]. I mean that is one of the reasons why I just wanted to give it up, I wanted to stop the treatment, stop fighting, because I couldn’t get their support. It’s lonely, cancer is a lot to take on by yourself and the treatments just wipe you right out, so I was done and then I realized that I didn’t need their support, I need to support myself, be strong, and never give up. I got a lot of that strength from the cancer support group here [ELLICSR]. Sometimes you just need to know that people give a damn and when someone else thinks your worth something so do you and so you fight. And those people [cancer friends] gave a damn.
P4’s experiences highlight the consequences that can emerge when emotional care needs are left unmet and of how appropriate emotional supports can assist people in effectively coping with the vast (and changing) emotional challenges they encounter throughout the diagnostic, treatment, and post-treatment phases of this illness.
5. Financial advice and assistance with logistical and material resources. While the