In this section, I explore the effects of breast cancer on women’s personal relationships, illustrating particular effects which were related to their life stage at diagnosis. I illustrate that, while the women often described feeling closer to their partners who had supported them through treatment, they also described a sense of difference to, and distance from, people around them. This was, in large part, because of others’ expectations of survivorship, which were in conflict with the reality of the women’s emotions. This sense of alienation may be experienced by women of all ages with breast cancer, but it was exacerbated by the fact that many women found it difficult to access experiential support because they felt that mainstream support groups did not cater to their age-specific needs and concerns.
Impact on relationships
A number of the young women described breast cancer as having a positive effect on their emotional intimacy with their partners when they had been supportive.
“It’s brought us closer together because when you’re going through something as, um, as difficult as that, you have to be open and honest and truthful I think, and you have to say what’s worrying you…I feel like, not that we weren’t together before, but we genuinely are a team, we are a unit.” – Tabitha
Chapter Seven – Findings – Biographical disruption
“I don’t think I’d ever imagined that that’s what it’s like to have somebody just standing by you through stuff, it’s amazing it’s really, really amazing.” – Olivia
The young women also valued friendships which were maintained throughout their
experience of cancer. However, they also spoke about negative effects on friendships, which they perceived to be because some people were unable to cope being around someone who had breast cancer.
“You do lose friends…They didn’t know how to support me through it. So instead of doing something, they’d do nothing. So then you’d lose contact with them.” – Kim
“I’ve found out who my friends are. I think that’s something that happens to you because people you thought would be supportive just disappeared…It’s the same way as in a bereavement, people shy away because they don’t know what to say to people…But then, y’know, the people that you thought wouldn’t be there are there.”
– Ruth
They were also sometimes able to forge new friendships with other young women who had been diagnosed with breast cancer, through their charitable work.
A number of the young women spoke about a changed relationship with their parents, and this was related to the fact that they felt that it was unexpected that they would be diagnosed with cancer at such a young age. Breaking the news of the diagnosis to parents was
described as particularly difficult as a daughter.
“You kind of get this sense of guilt having to tell people…Especially when it’s your Mum, especially when it’s something that in our society it’s mainly thought of
Chapter Seven – Findings – Biographical disruption
women her age in their fifties that should be going through this, not their daughters in their twenties.” – Naomi
When Tabitha told her family, they had all gathered at her parents’ home to hear the news, expecting that she and her husband were going to announce that Tabitha was pregnant.
“I think that’s probably the day that I hurt my parents the most…I felt like I’d broken their hearts that day ‘cause they were just beside themselves really…To have this happen now and be so young and still sort of newly-wed-ish phase and all of that, thinking I’m pregnant.” – Tabitha
Social expectations about who normally has breast cancer, and the life goals which women should have been reaching at their age, therefore, informed their relationships with their parents following diagnosis.
“My parents, they’re not young anymore…I want to be worrying about them, and I feel all the time my Mum is – I think she doesn’t sleep at night worrying about me.”
– Melanie
Breast cancer, therefore, had negative effects on some of the young women’s personal relationships, and this was in part due to the biographical disruption which the young women experienced, and the ongoing uncertainty about recurrence and health status.
Expectations about survivorship
Earlier in this chapter, I illustrated that the majority of the young women interviewed did not identify as survivors, finding that their uncertainties about recurrence in particular were a barrier. One outcome of this was that the young women found that their own and others’
Chapter Seven – Findings – Biographical disruption
expectations about cancer survivorship contrasted sharply with the reality of their experiences and perceptions of life after initial treatment.
“I hide it massively, like I can put on such a good front so easily…I can hear people, well like my parents’ friends especially being like ‘Oh she’s just so
inspirational’…But they don’t know the rest of the crap I don’t tell people when I go for a scan or when something bad’s happened.” – Melanie
“You don’t want to keep whingeing about it and I don’t, you don’t want to keep bringing it up and it’s like ‘Yeah get over it Lyndsey’ [Laughs] ‘You’re like a year
on now shut up’...They wouldn’t say it but I think maybe they think it.” – Lyndsey
For the young women, not only were they experiencing profound disruption to their lives and suffering with deep uncertainties, but they felt unable to communicate these to some key others because of others’ expectations about cancer survivorship.
“People expect you to be back to normal…You kind of want to shake people and go ‘I’m not okay, just listen to me!’” – Gemma
Their apparent return to ‘normal’ meant that emotions perceived to be negative, such as worry, were not expected, and the women thus felt restricted in the emotions which they could express. The social role of the survivor, therefore, was perceived by the women to preclude the expression of such feelings as pain, grief, or anxiety about the future, to friends and others.
Little et al. (1998) identified ‘communicative alienation’ in the accounts of their
participants, defining it as the recognition that other people could never fully understand the experience unless they had been through it themselves. They conceptualised this as a
Chapter Seven – Findings – Biographical disruption
dimension of liminality, however, it could be understood as a consequence of a combination of liminality and the social expectations of survivorship. The young women in this study felt neither ill nor well, but they were not able to express this sense of an in-between state to many others around them, in part because others had not been through the same experience, but also because they perceived the survivor role to foreclose the possibility of divulging such feelings.
Age-related barriers to experiential support
Experiential support – the support of peers who have been through a similar experience – has been identified as very important to young women with breast cancer (Snyder and Pearse 2010). The previous section discussing the sense of difference and separateness which young women felt from their peers highlighted the importance of accessing such experiential support. At least five of the interviewees attended Breast Cancer Care’s Younger Women’s Forum, which is an event, held over a weekend for young women affected by breast cancer. They described this event as being valuable in terms of accessing information relevant to them and meeting others in a similar position.
“I found it quite rewarding really, meeting a lot of other women who were going through the same thing…I think it helps.” – Ruth
The women interviewed found it difficult to access experiential support because of the lack of support groups aimed specifically at younger women. Some of the women had attended mainstream breast cancer or cancer support groups, but often they only attended once and found them to be unhelpful or even distressing.
“Going through it when you’re fifty you’ve got a family, you’ve got kids, it’s completely different! Like I’ve got no idea what it’s like to be a fifty-year-old going through cancer. But a twenty-six-year-old, a thirty-year-old, going through it that
Chapter Seven – Findings – Biographical disruption
hasn’t got kids, it feels like your whole future is in jeopardy, for different reasons.”
– Naomi
“I’d overheard people say ‘Well this has made us slow down, we’re just chilling out now we’re gonna have an early retirement and we’re just gonna look after ourselves and have fun’, and I was like ‘Wow great, great for you, but my life needs to speed up now and get back on track.” – Joanna
The young women found that they did not fit in at mainstream breast cancer support groups, or cancer support groups. They, therefore, felt neither the same as their peers, as evidenced in the previous section, but also neither the same as others with a history of cancer, because of their age and their different life experiences and concerns about the future. These findings suggest that health providers and breast cancer support services need to take into account the significance of age when referring patients to groups, and when providing support. Rather than being helpful, mainstream breast cancer support groups may be distressing for young women, and result in an increased sense of isolation.
Conclusion
The findings in this chapter have illustrated the extent and nature of biographical disruption for young women’s lives during and beyond breast cancer treatment. The discovery of symptoms and deciding to see their GP was a process which involved challenging their own and others’ assumptions about who is diagnosed with breast cancer, and also their
assumptions about themselves as healthy young women. Four of the women reported finding GPs to be dismissive of their concerns because of their age, and they had to return on
multiple occasions as a result of this ageism. Three women’s experiences of being diagnosed during pregnancy illustrated that this engendered further discomfit, challenging their