This year more than “forty-two thousand (42,000) woman in the US will die of breast cancer” (BreastCancer.org). At survivingbreastcancer.org we are privileged to continue recording several discussions (webinars) with Abigail Johnston and her peer group Grieving Together. Topics have ranged from estate planning, palliative care, & hospice to the many forms of grieving. Our upcoming webinars and #FeatureFridays look to further these discussions, and to perform a deep dive into the loss of loved ones due to breast cancer.
On January 24th we meet the mothers who have lost their daughters to breast cancer.
On February 7th we meet the husbands who have lost their spouses.
And we close the series on February 21 by meeting the daughters who have lost their mothers to breast cancer.
In today’s #FeatureFriday we look at Disenfranchised Grief.
Grief is a complex emotion that may assume many shapes and manifestations. There are several notable types of grief, with disenfranchised grief one of the least well-known. For that reason alone, it may be one the most demoralizing.
Disenfranchised grief is a term used to describe grief that is not acknowledged by society. Coined by Ken Doka, he describes it as “Grief that persons experience when they incur a loss that is not or cannot be openly acknowledged, socially sanctioned or publicly mourned.” [1]
Examples include the
· Death of a friend
· Grieving the loss of someone we’ve ever known online
· A trauma in the family
· The losses of a pet
· Infertility
· Miscarriage
· Losing someone to suicide
· The loss of a partner in an extra-marital affair
· Loss of independence
It “is an ethical failure to respect the bereaved both in their suffering and in their efforts to overcome it and live meaningfully again in the aftermath of loss”[2]
Disenfranchised grief also occurs when society treats your grief as insignificant. In these cases you are not only grieving in silence, but also the right to mourn that loss.
Thus disenfranchised grief occurs when society invalidates that feeling of grief or treats it as insignificant. This may happen in cases where the loss suffered is stigmatized, if the relationship is seen as insignificant, or if the relationship is stigmatized by society.
“One of the most demoralizing things about disenfranchised grief is that often grievers don’t get the support they need. This means they can become vulnerable to loneliness, guilt, and depression.” [3] This lack of support serves to complicate the grieving process and makes it harder for the griever to heal.
Origination of disenfranchised grief
Disenfranchise as a concept was originally used to describe the action of depriving someone of their civil rights. Similarly, this deprival is essentially what people who experience disenfranchised grief feel, as their right to mourn is not recognized by society.
Factors than can cause disenfranchised grief
Normally we get support and validation from others after losing something or someone we love. This recognition plays a pivotal role in the mourning process, since recognition and validation are necessary for healing.
However, people who feel disenfranchised grief don’t receive this recognition, so in addition to losing their loved one they also lose the opportunity to mourn it, thus they’re denied the right to recover from that loss.
How disenfranchised grief occurs
Grief that is not acknowledged
If the relationship between the griever and the person they lost is not recognized, people may minimize the griever’s feelings because they don’t perceive the bond strong enough to warrant grief. Similarly, the stigma of people with mental disabilities and the perception of their inability to “show” emotion.
One’s loss is not recognized
In some cases, the loss is not considered emotionally significant or there are value judgements made on the person who passed away because of stigma such as suicide, or being in a gang.
Grievers themselves are not acknowledged
Following a loss, there’s usually an 'obvious griever' who receives the necessary support, but that could leave other grievers who do not receive condolences without an outlet to express their feelings. For example, the wife who lost her spouse, but what about the coworkers of the spouse?
How to cope with Disenfranchised Grief
It’s important to provide acknowledgement and self-validate what you are feeling. Your thoughts and feelings serve a vital purpose in your healing. Recognize how you feel today because of the loss and what you need to do to move forward. Allow yourself to be with those feelings without judgment. Grief will look different for different people and there is no right or wrong. Some people may be more private, others may make art and memorialize their loss in creative and meaningful ways.[4]
Healing does not mean that the grieving ever goes away, that loss will forever be part of us, but perhaps, as we heal, it will take up less space as it ebbs and flows throughout our day to day.
News Articles
Cancer narratives are a phenomenological source of insight allowing us to develop knowledge on personal and societal transitions in the self-identity of individuals with cancer as their lives are abruptly threatened by it. This study analyzes a nonheroic narrative focusing on Dan’s (pseudonym) grief and disenfranchised grief as his cancer progressed. It illustrates his growth in self-identity despite his body’s deterioration throughout his long hospitalization until death at the age of 33 years.
Women who have survived breast cancer often suffer from short-term and long-term sexual side effects due to the different treatments that they undergo. The sexual side effects and altered sexual self-schema can affect their quality of life significantly and may result in a deep sense of loss. However, their intimate partners, family, friends, health care providers, and psychotherapists may not acknowledge this ambiguous loss. Hence, grief related to their loss may be disenfranchised a kind of grief that is precipitated by a loss that cannot be socially sanctioned, openly acknowledged, or publicly mourned.
Family members and friends of cancer survivors share in the survivorship experience (National Cancer Institute, n.d.), have similar needs, and experience psychological distress not unlike that of diagnosed individuals. According to Weaver et al. (2010), an estimated 562,000 U.S. minor children live with a parent in the early stages of cancer treatment. Children and adolescents living with a parent with cancer desire knowledge about cancer, experience role changes, and rely on family and the community for communication and normalcy in their lives.
Disenfranchised grief is a term used to name grief and mourning that society as a whole and/or a persons immediate family and friendship circle don't recognize as legitimate. The relationship to the person they lost isn't acknowledged or the impact of the loss is minimized.
References:
1. Doka, K. J. (November 2018). Is there a right to grieve? https://www.psychologytoday.com/us/blog/good-mourning/201811/is-there-right-grieve
2. Tillman, D. (October 2013). Grief and loss weekly reflection paper. https://lifesjourney.us/ambiguous-loss-and-disenfranchised-grief/
3. Marques, D. (October 2019). What is disenfranchised grief. https://www.happiness.com/magazine/health-body/disenfranchised-grief/
4. Padilla de Front, D. & Mayner, D. (February 2020). Disenfranchised grief: what it is & how to cope.
Find Survivingbreastcancer.org upcoming events covering these topics on our website.
