Survivor loneliness of women after breast cancer
A new study has found that women following a diagnosis of breast cancer conveyed a unique description of loneliness that was termed survivor loneliness.
They described how they felt alone in the awareness of mortality and were invalidated in the experience of ongoing symptom burden, a changed sense of identity and connection, and an altered threshold for distress that pervaded their long-term experiences.
As they sought ways to lead more authentic lives, the women sometimes withheld truth or projected images they perceived as inauthentic, contributing to their loneliness. Paradoxically, as survivors perceived connections with others as more fragile, they also felt a strengthened vitality of connection, particularly with their children, and a deepened sense of empathy and connectedness to the suffering of others.
Findings shed light on the ongoing symptom experience of women and the isolation they experienced as they sought to work through an altered sense of self, connection, and identity as breast cancer survivors. Although survivor loneliness was experienced by all participants, findings suggest that some women may be more vulnerable to heightened psychological distress.
And now, we come to the point that I make again and again …follow-up care should include giving recognition to survivors’ experiences and normalizing the situation to allow for survivors’ expressions of experience.
Through attentive and empathic assessment, clinicians need to be alert to the unmet needs of longer-term survivors, including the experience of survivor loneliness and the importance of identifying and assisting survivors who describe heightened distress. Prospective studies are needed to examine survivor loneliness and the factors that make some women more vulnerable to psychological distress. Grounded theory studies are needed to delineate the phases and challenges of breast cancer survivorship, including survivor loneliness.
Young breast cancer survivors and the 5 year milestone
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Marie, thanks for continuing to post information about the post-treatment issues of breast cancer survivors. I believe there is hope if we keep raising awareness about these issues and that future care will be taken to incorporate continued help for survivors as part of an over-all treatment plan. I go to a therapist, but it wasn’t until post-cancer treatment the first time and I found myself in a deep depression that I finally sought help. It would be good to encourage survivors to get counseling help as soon as possible, before the true depression hits. And insurance companies must be made aware that this is part of the medical treatment.
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Thank you so much Debbie for endorsing everything I too believe about the emotional difficulties we face in the post treatment phase of our cancer journey.
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Marie,
This is really interesting. I had not heard of “survivor loneliness,” nor did I realize the concept of survivorship, of living with/after breast cancer, was itself a fairly recent phenomenon until I was diagnosed and heard from others about their experiences. (I guess I shouldn’t be surprised; it wasn’t that long ago that people didn’t even talk about breast cancer.)
I completely agree that we need to attend to body, mind and spirit after cancer. I’m glad that’s beginning to catch on in the U.S. and I hope it is in Ireland too. Omaha Neb., where I live, has the A Time to Heal program, a holistic program for physical and emotional recovery started by a psychologist and nurse/survivor because we didn’t have anything like it for survivors–and it’s only three or four years old! I did not sign up–I’m more the solitary keyboard jockey type–but a friend did and she said it helped her a lot.
Whether you experience survivor loneliness or not, I do believe the experience changes you.
Thank you for shining a light on this.
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Jackie, it is great to hear about A Time to Heal – we certainly need these kind of programs!
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I feel so alone, abandoned, just a mad woman to those in my life before breast cancer, and to the medical so called professionals just a number. I have no support and no understanding, so that I feel I am unworthy of life, an absolute pain to everyone who supposedly loves me, and really can see no future, What is the point of surviving
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Jan, I am so sorry to hear you are feeling so dreadfully low after cancer – please know that these feelings are quite common and if they persist to get you down this much please seek some professional help to show you a way through the darkness you are experiencing right now. Is there a cancer support centre near you? They usually provide a counselling service specifically aimed at women with cancer or who have a history of cancer.
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Jan, I understand and feel your emotions. I feel a part of me died the day i found out I have breast cancer. The loss is so profound that it is hard to put into words. My sister just had her first chemo treatment on friday and I looked around at the staff doing there job with no eye contact and no compassion. Please e-mail me at jjmax40@hotmail.com I might not have all the answers but I DO understand. 🙂
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