The news of Poonam Pandey, a model, faking her death on social media caused quite a furore. The PR team put out a statement on Instagram declaring her demise from cervical cancer. The very next day Pandey took to social media and explained this was her attempt at raising awareness around cervical cancer.
Consequently, Poonam and her publicity team were largely criticized on social media for their insensitivity towards survivors of cervical cancer. Following which MSD, the drug company that sells the HPV vaccine in India, distanced themselves from Schbang, the people behind this publicity stunt.
Refocusing on the lived experience of cervical cancer survivors
Poonam Pandey’s stunt trended on social media and led to divisive opinions among netizens. While Pandey grabbed eyeballs, the fact that cervical cancer remains the second most common cancer diagnosed within Indian women got relegated to the corner.
Over 365.71 million Assigned Female at Birth (AFAB) persons in India are exposed to the risks of developing cervical cancer. Although when detected early cervical cancer is treatable—besides the HPV vaccine is 97% effective when administered before exposure to the HPV virus which causes the cancer. It can still have a multifaceted impact on survivors. Like any other cancer, it has tedious physical symptoms, but its psychological impacts can be equally insidious. Coming to terms with a cancer diagnosis is a gruelling mental health challenge. However, living with it can lead to anxiety, depression and isolation.
The difficulties of Living with a Chronic Illness
Like many other chronic illnesses, living with cervical cancer can be debilitating for a person. Often due to social mores, women suffer through diseases and chronic illnesses silently. When a medical condition or illness persists over time and requires daily management, it falls under the ambit of chronic illness. For instance, arthritis, heart conditions and diabetes type 2 are all chronic conditions. Over time it gets classified as a disability if the experience can substantially affect a person’s ability to cope with their day-to-day existence.
Often, it affects the mental health of a person. The correlation between a chronic illness and developing mental health conditions have become clearer over time. It can be a very alienating experience to receive a diagnosis of a chronic condition. Without proper support—therapeutic, medical and otherwise—it can be a hard transition for an individual.
Mental health challenges arising out of this can be many. A person can develop a pessimistic attitude and suffer from depression. Conversely, it can be hard to manage the anxiety of having a chronic condition. This can often show up as anger and irritability. There can be more physical symptoms like loss of appetite, fatigue, headaches and insomnia.
Often due to exaggerated moral scrutiny on them, a woman can have feelings of shame and feel guilty for having a chronic illness. If left unsupervised, it can even lead to suicidal ideation.
The minimizing of women’s pain in the medical community
From within the social media storm around Pandey’s death hoax, yet another relevant criticism has surfaced. A woman lying about her own death or about having cancer is only going to worsen the negative stereotypes surrounding women in medical spaces. With more research, there is growing evidence, that women’s lived experiences, and their pain is routinely misunderstood or minimized by medical health professionals. There is an anomalous assumption in medical communities that women exaggerate their symptoms, which leads to women being underdiagnosed and understudied.
Last year, Smriti Irani rebuffed a plea for paid menstrual leave and declared women do not require extra assistance during their menstruating days. She pointed that the menstrual cycle is not a ‘handicap’ that requires assistance, and this move could lead to women losing out on employment opportunities.
Due to this added pressure of being seen as the ‘weaker sex’, cases of chronic illnesses among women are underreported. Access to medical amenities is another issue in India. Additionally, economic affordability becomes a factor as well. Gardasil 9, one of the vaccines that target 9 of the HPV variants is priced at 10,850 INR per dose and the quadrivalent Gardasil at 4,000 INR.
According to studies, the number of women who are working around a chronic illness without a definitive diagnosis is much higher. Stunts like these can further affect an AFAB (Assigned Female at Birth) person’s chances of being taken seriously when they try to get medically evaluated.
What are the ingredients of an impactful awareness campaigns?
Some core tenets of an effective awareness campaigns are respect and empathy. This is where Pandey’s awareness campaign failed to deliver. A conversation started and quickly became a controversy, burying the actual issue.
An awareness campaign should be rooted in the need to educate people, not shock them. Well researched facts presented with nuance and empathy are the cornerstones of a good awareness campaign.
There are a lot of people in India’s workforce who live with chronic pain and struggle with it silently. Such employees have unique needs that require to be accommodated.
An awareness campaign that seeks to support the needs of chronically ill people could have some of the following components:
To begin with an awareness campaigns will start with the basics. This will cover an understanding of chronic diseases, its multifaceted effects, and its incidence among various social groups. Having established that the campaign will segue into educating its audience about what chronic illnesses can commonly affect Assigned Female At Birth (AFAB) persons.
This will lead into a queer inclusive understanding of the issue. Which means it will delve into the nuances of gender and AFAB bodies. It will explain that anyone assigned female at birth may not identify with their assigned gender. Therefore, the chronic illnesses that affect cis-gender women can also affect transmen and gender-queer, non-binary persons as well.
The awareness campaigns will not only educate its audience, but also inculcate practices of self-reflection where audiences will be educated about cognitive biases. Which are unconscious prejudices we may hold against socially marginalized identities.
The awareness campaign would cite by example some discriminatory practices that are relevant to gendered stereotypes around chronic illnesses. And it would then educate it audiences about how to change their perspectives.
An awareness campaign will also suggest all the ways in which organizations can support individuals living with chronic conditions. These are some of the directives that can be included:
- At the outset, having anti-discrimination clauses in the company policy would be a good start.
- Myths surrounding the chronic illness should be debunked. In this case it could be that, sexual activity is not the sole reason one might get cervical cancer.
- The organization can advocate for better testing within employees. In this case, employees within the age of 21 to 65 should get a Pap smear or HPV test done.
- The organization should use inclusive language and an empathetic tone when speaking to survivors. For instance, cancer survivors might often exhibit changes in their appearance. Employees could be educated on empathetic language while approaching such individuals.
- The organization can undertake employees about different treatment and therapy options in case of cervical cancer.
- Conversely, the medical records of employees should be kept confidential and not shared without consent.
- Financial accommodations can be provided to such employees by including chronic conditions while drafting medical benefits or insurance policies.
- Conversely, employees living with chronic conditions will also have psychosocial barriers. The workplace can be made more accessible and inclusive by having mental health professionals on the payroll; allotting mental health days; or providing flexible work hours.
Awareness campaigns can be a starting point where organizations can become cognizant of the issue and be educated in all the ways they can support such employees. The wellbeing of the employee will lead to the holistic growth of the organization as well.
Did you know?
The Indian Council of Medical Research National Cancer Registry Programme (ICMR-NCRP) stated that India received 340,000 cases of cervical cancer in 2023.
During our interim budget the finance minister, Nirmala Sitharaman, announced the government’s decision to encourage more testing and vaccination against the HPV virus among girls within the ages of 9 to 14.