Health stigma is a prickly burr in my side every single day. The stigma that has blanketed pelvic organ prolapse (POP) in silence despite nearly 4000 years on medical record confuses the tar out of me. We talk about breast health out loud. We talk about erectile dysfunction and penile health out loud. Yet some health concerns, intimate or otherwise, remain stigmatized, and make us uncomfortable, sad, vulnerable, affecting our sense of self. Why can’t everyone talk comfortably about pelvic organ prolapse out loud?
The quality of life impact of POP is far reaching, impacting women physically, emotionally, socially, sexually, as well as in fitness and employment. When I asked members of APOPS support forum to share in one word how POP makes them feel, their fingers immediately hit the keyboard, flooding our space with hits.
Defective, frustrated, isolated, stunned, alone, shocked, broken, embarrassed, weird, handicapped, sloppy, damaged, freaky, limited, imprisoned, uncomfortable, disgusting, empty, violated, disabled, fearful, vacant, wasted, lonely, gross, weak, droopy, destroyed, limited, ruined, depressed, solitary, hopeless, scared, old, ashamed, pained, worried, drained, misguided, betrayed, forsaken, angry, defeated, cheated, demoralized, deformed, suicidal, useless, failure, robbed, gross, grieving, afraid, cautious, nervous, vulnerable, limited, devastated, weird, forlorn, abnormal, helpless, silenced, guarded, invisible, terrified, hindered, unlovable, broken, repulsive, ashamed, hurting, imprisoned, marginalized, unfeminine.
Pretty much says it all.
Then I asked them to share how they felt after they’d been treated for POP, and had recaptured their pelvic health.
Empowered, warrior, passionate, support, determined, hopeful, informed, life-changing, sexual, confident, educated, patience, hopeful, acceptance, strong, fearless, educated, whole, together, “poptitude”, proactive, sisterhood, options, capable, hopeful, mended, reborn, liberated, WOMAN, fearless, informed, grateful, rejuvenated, determined, renewed, relieved, regenerated, unburdened, survivor, supported, resilient.
Earlier this month, I participated in a workshop to address stigma called Rude2Respect, a vision of Cheryl Gartley, founder of Simon Foundation for Continence. The Rude2Respect workshop brought together participants from multiple stigmatized health conditions, to brain-storm tools to generate change. There are multiple health conditions that are stigmatized besides pelvic organ prolapse; mental health, autism, AIDS, venereal disease, leprosy, Tourette’s, Downs Syndrome, and alopecia to name a few. Other once stigmatized conditions such as breast cancer, erectile dysfunction, and aids have overcome stigma. What enables the gap between conditions shrouded in silence and those which have overcome stigma?
Lack of public awareness of the reality of stigmatized conditions is the most significant obstacle for people experiencing them. A number of nonprofit, advocacy, corporate, and government agencies have launched campaigns to reduce health stigma, using posters, brochures, social media, YouTube, radio and television programs. At times, we introduce legislation to bang the drum, as APOPS has done with governmental designation of June POP Awareness Month. But the reality is, until individual people talk about stigmatized health conditions out loud, campaigns will seldom be effective without mass media exposure or a celebrity at the helm. Health, academic, and corporate sectors need to do a better job of walking the walk, not simply talking the talk on their websites. It amazes me daily that while women from nearly every walk of life reach out to APOPS with POP concerns via our social media spheres or website, few women in medical practice or the health industry admit to experiencing POP. The silence of pivotal voices rings loudly in my ears. We clearly have a long way to go to eradicate POP stigma.
Perhaps it is difficult for the health care and industry organizations, groups, and employees to promote anti-stigma programs. However, they should examine their mindset, objectives, behaviors and activities to ensure that their lack of voice does not contribute to stigmatization and consequent discrimination. They should participate in the efforts of advocacy to reduce stigma and its reprehensible consequences, initiating efforts whenever possible to engage. Doing nothing about stigma and the discrimination that comes with it is no longer an acceptable option for those entities that benefit from providing tooling and treatments.
We all have a role to play to bring pelvic organ prolapse out of the closet. I talk about POP out loud every chance I get in social media, as well as continually chase down newspapers, magazines, daytime talk programs, radio, every media outlet available, in an attempt to generate open POP dialogue. Pelvic and vaginal health are wellness topics, nothing more, nothing less. But you’d think I was asking journalists, editors, and program producers who spearhead the most effective marketing tool available, the media at large, to present their programs and articles literally stripped naked in front of a camera. All media needs to do to eradicate the stigma of pelvic organ prolapse, or any other stigmatized condition, is initiate an effective dialog out loud. All patients want are the facts, and all we need to do to override stigma is to share those facts effectively with everyone, rather than only the patients and immediate family members experiencing stigmatized health conditions.
Stigma is a very significant aspect of public health, an obstacle to obtaining health balance that compromises emotional recovery. There is little doubt, those navigating stigmatized conditions receive less social support and have less access to goods and services than people suffering from non-stigmatized conditions. Pelvic organ prolapse, as an example, has been on medical record for nearly 4000 years and is estimated to impact 50% of women, but they are seldom informed the condition exists prior to their diagnosis, despite childbirth and menopause being leading causal factors.
There is zero doubt in my mind, pelvic organ prolapse will springboard the next significant shift in women’s health. I am hopeful the world at large will wake up to the devastating impact of stigma, and will join hands with health advocacy to engender change.