When a woman is diagnosed with or is being treated for gynecological cancer, a group of cancers that often have a higher morbidity rate than other cancers, how should she feel? How should she express her feelings about it? Should she strive to maintain a positive attitude in the face of her terrifying and overwhelming situation? What happens to her if she feels or expresses fear, sadness, guilt, or any other negative emotions? Will doing so harm her and her chances of survival?
These are critical questions for both gynecological cancer patients and for the members of their support systems, when most people in this situation realize that none of them are sure what to say to each other to be helpful and supportive in the face of such a devastating and potentially life-threatening illness.
New research by SC&I Ph.D. student Allyson Bontempo and her co-authors (SC&I Associate Professor Lisa Mikesell is Bontempo’s Ph.D. advisor) reveal that providing gynecological cancer patients with the freedom, permission, and support to express negative emotions if they want to is not only okay and healthy, but it is critically important and can provide gynecological cancer patients with significant benefits.
Bontempo, whose co-authors are SC&I faculty members Kathryn Greene and Maria Venetis; SC&I alumnae Danielle Catona, Ph.D ’15, of George Mason University; and Maria G. Checton, SC&I Ph.D. ’08, of the College of Saint Elizabeth; and Alexandre Buckley de Meritens, M.D. and Katie A. Devine, Ph.D., both of the Rutgers Cancer Institute of New Jersey, published their findings in the paper “We Cannot Have Any Negativity”: A secondary analysis of expectancies for the experience of emotion among women with gynecologic cancer,” in the Journal of Health Psychology (SAGE) on July 21, 2020. The larger study from which this paper was derived was led by Greene, the principal investigator of a research study exploring whether gynecologic cancer patients and their support persons hold any information back from each other and the potential impact of this on support persons accompanying them to their oncology appointments.
“I think the most important thing is that patients feel like they are ‘allowed’ by others (and themselves) to even experience negative emotions,” Bontempo said. “Here in Western society, there are strong societal expectations to ‘be happy’ or ‘be positive.’ I’m sure most people have seen these messages on social media or even as physical signs and wall décor. Although well intentioned, this places a lot of pressure on individuals to feel a certain way, and if they don’t, an inner sense of guilt or failure, for example, can be experienced, which further compounds individuals’ pre-existing negative emotions. For example, our article cited previous research that demonstrated that the perceived pressure to not experience negative emotions is statistically associated with greater depression scores and feelings of isolation.
“Our emotional responses to our emotions are termed secondary emotions and they are believed to be even more powerful than our primary emotions. In the context of cancer, and in the case of this research, gynecologic cancer (which has higher morbidity rates than other types of cancer), the pressure from these socially-imposed and even self-imposed standards for how to feel can be even greater. However, it is normal, expected, and even healthy to feel sad or anxious about cancer. All of our emotions—good and bad—serve some kind of adaptive function. When a person is diagnosed with cancer, why should they not feel sad or anxious, when their entire life is being turned upside down? So, I think it’s important that gynecologic cancer patients and even other cancer patients know it is okay to experience negative emotions and that it’s healthy to accept them.”
In addition to letting gynecologic cancer patients know it’s okay and even healthy to feel their negative emotions, Bontempo said it’s equally critical to let them know it’s not harmful to express them as well. “It’s important that they are aware that there is an open channel for communication should they need it,” Bontempo said. “Everyone experiences cancer differently, so some may have stronger negative emotions than others and some may have the desire to talk about it and some may not. But again, should they need or want to talk about their negative emotions, it is important that they know they can. If they can’t, or even perceive that they can’t, they are going to be bottling up all of their feelings, which isn’t healthy. Furthermore, by not opening up to others, they are missing out on opportunities for social support, especially emotional support, which can impact their mental and physical health. They are also missing out on opportunities to develop a deeper connection with those whom they wish to speak with about their negative emotions, which can impact their relational health.”
Describing a particularly revealing interview Bontempo said she reviewed during the course of this research, she said, “There was one mother of a patient who, in the interview, spent some time talking about how she always tells her daughter to stay positive, that she can’t be negative, that she can’t have a pity party or feel like ‘woe is me.’ I subconsciously put myself in the shoes of the daughter (the patient) and it just felt stifling. Having and managing cancer is hard enough, I would imagine, but then when others impose these emotional ‘rules,’ that’s one more thing the cancer patient has to manage. And I imagine it can become exhausting.”
Their research revealed there are significant benefits for cancer patients when they feel completely free to express negative emotions, Bontempo said. “I think what’s really important here is the focus on the dyadic or relational nature of these relationships,” Bontempo said. “Having these open communication channels allows for patients to receive emotional support, and although this has implications for patients themselves, this exchange of emotional support can allow these relationships to develop on a deeper level, can increase relational satisfaction, and likely reduce feelings of isolation for the patient. It can allow for supporters to better manage the patient’s mental and physical health, including helping them to seek out professional psychological support if needed.
“A quote I really love is from a book I’m reading now, titled ‘In Shock,’ written by a medical doctor, Rana Awdish: ‘When we are sick, we are humbled by our dependency on others, the loss of control, the uncertainty of the ending. This change opens channels for communication we are hardwired not to tune into during the monotonous routines and spaces of normal life. Recognizing those open channels and fostering connection in full view of the knowledge is what heals. Making the choice to be present for someone else’s suffering requires a kind of anticipatory resolve. Because it does get hard, sometimes even unbearably so. The choice to be present means deciding at the outset that you will be there for the duration. That premeditated sort of intentionality may not resonate with the kind of effortless empathy we’d imagined, until we remind ourselves that all forms of love require work and a fierce commitment.’”
When asked how family members, support persons, healthcare providers, and others who support gynecologic cancer patients can encourage the patients to openly talk about their negative emotions, and help validate them, but not to the point that that the patients get “stuck” in their negative emotions, Bontempo said, “That’s a tough question and probably one better suited for a clinical psychologist with the appropriate training. But I will say that validating a patient’s negative emotions is important, but it is also important that the patient’s negative emotions do not become distressing or begin interfering with their daily functioning. If it comes to that point, I would say it would be important to get a clinical psychologist involved to help the patient manage their negative emotions to a level that is healthy and allows for day-to-day functioning. I believe involving the primary support person of that patient in those sessions would be important too, to help educate the support person so that they know the best ways they can help, as well.
“Additionally, validating a patient’s negative emotions is important, but it is also important that they continue to manage their cancer and do what they need to do to manage their health. I don’t see either of these two scenarios as being dichotomous, and indeed both can occur simultaneously. There was one supporter in the study, a daughter of a cancer patient, who explained that when her mother initially found out about her cancer diagnosis, she was a bit in denial. She had kept asking her daughter if she was sure, if this was real, if they should get a second opinion. And in retelling this interaction in the interview, the daughter said that she had said to her mother that all of those were valid questions and valid things that they can do, but that they still needed to go to the appointment and follow up. So, in this interaction, I saw the daughter of the patient quite explicitly validating her thoughts and feelings but also verbalizing to her mother the need to continue to take action. It seems very much like a delicate balancing act. A book I recommend not just for cancer patients but for really anyone is “The Happiness Trap” by Russ Harris. It’s based on ACT (Acceptance and Commitment Therapy), which takes the same perspective on negative emotions as I have communicated here and also makes the point that we as humans have much less control of our emotions than we actually think we do.”
Sharing their research findings with healthcare providers, so they can inform gynecologic cancer patients and their support persons that it’s helpful, even beneficial, for them to express negative emotions, is also a goal of Bontempo and her co-authors. “I think it’s really important for healthcare providers to be informed of the implications of these findings. I think more research may need to be done to drive this point home, especially when trying to inform and influence healthcare providers. The larger study from which this paper was derived had a somewhat small sample size. Additionally, this paper was a secondary analysis of the data that emerged from the larger study that was not focused specifically on expectancies for experiencing and expressing negative emotions. Accordingly, another interview study with a larger sample size, and that specifically asks patients about expectancies for negative emotions, could really drive this point home with the benefit of providing even more insight. Nevertheless, it would be beneficial for healthcare providers to be informed of these results for at least three reasons.
“First, these findings have implications for the way healthcare providers interact with patients in the medical encounter. As such, making sure this notion is already included in communication skills training programs for healthcare providers—especially for oncologists—is important.
“Second, gynecologic cancer patients typically aren’t alone during their medical encounters and are often accompanied by one or more support persons. Thus, encouragement by healthcare providers to patients and their accompanying support persons to be open about negative emotions may be insightful for support persons, especially because this information is coming from a perceived ‘expert’ or ‘professional’ – and is therefore advice that is harder for support persons to contest. Of course, cultural norms are important here as well, given that different cultures have different values with regard to the experience and expression of emotion.
“Third, during appointments when patients are unsupervised, or even during a portion of an appointment when patients are unsupervised, a healthcare provider can do a quick check-in with the patient to make sure they have the support they need to talk about their negative emotions, should they need to. This can provide healthcare providers with the opportunity to check in on the patient’s relationships while not in front of the support persons, which may be perceived as adversarial by the support person. This would also help the healthcare provider determine whether or not support from a mental health specialist would be beneficial for the patient.”
Looking ahead, Bontempo said she and her co-authors will continue this research, and their current findings will help shape their next steps. “I definitely see promise in conducting a follow-up study such as the one I detailed just above, including another interview study with a larger sample size and that specifically asks patients about expectancies for negative emotions. This further research could really drive this point home with the benefit of providing even more insight.
“These findings have implications for other types of cancers and medical conditions as well, so I would be interested to see how this notion takes shape in these other patient populations. What is specifically interesting about gynecologic cancer is that it is of course specific to biological females, and there are also sex and gender norms concerning emotions. So, what would this look like in a context for male-only cancers, such as prostate cancer? Would there be as much of a need for these patients to talk about their negative emotions, at least as a result of the way they were socialized into their typical male role, in which ‘boys don’t cry’?
“I see this also having applicability to teens and adolescents, especially due to the rise in anxiety, depression, and suicide in this population. One other context I would like to investigate is these messages on social media, especially Pinterest. As a Pinterest user myself, I constantly see quotes with the same underlying messages of ‘be happy’ or ‘be positive,’ with happiness almost always being portrayed as a complete choice based on the thoughts we think. Although there is some merit to this, emotions, again, are oftentimes not as under our control as we think. I think these messages perpetuate these unhealthy social expectancies to always be happy and this notion of toxic positivity. I think this is especially so for teens and adolescents for whom mental illness is increasing at an exorbitant rate and because of how much attention is already being given to the relationship between social media and mental health.”