The ‘Missed Disease’– Rediscovered? A Film Review

“Below the Belt” (2023), already the second documentary on the chronic medical condition of endometriosis by the US filmmaker and producer Shannon Cohn after "Endo-what?" (2016), aims to “shine a light, a bright light on endometriosis” as executive producer Hillary Clinton claims in the opening credits. The documentary was shown during the 2023 Summer Academy week organized by the Swiss Study Foundation, during which the participants dealt in depth with chronic diseases in the 21st century and the associated socio-cultural complexities. One of the chronic illnesses discussed was endometriosis and the film was shown in order to complement the academic discussion. Against this background, the academy participants identified three key aspects they chose to take a closer look at – the portrayal of endometriosis as an illness, the portrayal of women suffering from it, and the portrayal of structural political and cultural issues – and then subsequently discussed whether the documentary lived up to its own high standards.

Portrayal of Endometriosis as an Illness

The documentary “Below the Belt” tells the story of Jenneh (30), Emily (26), Kjung (39), and Laura (28), all suffering from the seemingly mysterious symptoms caused by endometriosis – the “missed disease.” As common as diabetes or asthma among the global population – and yet not nearly as well-known. The film accompanies the protagonists and their families on their path to diagnosis and treatment, marked by many setbacks and struggles, and sheds light on what it means to deal with a disease that is widely under-diagnosed, under-recognized, and under-researched and under-funded, with a very narrow range of effective treatments. Despite its honorable efforts to put such a common but ignored illness, up to 10 percent of women of reproductive ages are globally affected according to As-Sanie et al., 2019 (1), to the center of societal attention, some aspects are left short. For instance, the documentary seems to miss out on a clear explanation of the disease itself. In literature, endometriosis is described as a “systemic, painful, chronic and inflammatory disease characterized by the growth of endometrial-like tissue outside the uterus”(1).

In other words, Tissue that is similar to that of the uterus‘ inside, suddenly appears outside of it, affecting a variety of organs, causing, among other symptoms, scars, severe pain, and chronic fatigue. Other common symptoms include, according to As-Sanie et al., “heavy menstrual pain, pain during intercourse, chronic pelvic pain, infertility, back pain, fatigue, and painful bladder and bowel movements” (1). “Below the Belt” touches on this substantial medical background only briefly. A quick definition is read to us, the viewers, and some numbers are shown; but what the disease really is, remains unclear to those at least who do not have knowledge about the condition beforehand – which, given the missing general awareness of the condition, probably applies to the majority of viewers.

As the film progresses, it succeeds in highlighting the seriousness of endometriosis, a condition that is often underdiagnosed, with a disheartening average delay of 7 to 12 years between the onset of symptoms and a definitive diagnosis (1). "Below the Belt" boldly confronts this diagnostic delay, emphasizing the need for early identification and intervention. While the documentary admirably addresses some of the core facets of endometriosis, it primarily focuses on two predominant symptoms: infertility and pelvic pain. These aspects are undeniably significant, yet it is important to note that endometriosis encompasses, as mentioned above, a wide spectrum of many more distressing symptoms. The film's potential for even greater impact could have been realized if it had delved deeper into the multifaceted nature of the condition and included a wider range of patient experiences. And: By presenting surgery as a seemingly definitive “quick-fix,” the documentary may inadvertently oversimplify the complex issue of chronic pain.

Portrayal of Women

“Below the Belt” certainly deserves credit for placing women with endometriosis at the center of the story: the audience sees their feelings of hopelessness and despair in a very personal and close-up frame. Further, the movie addresses the menstrual stigma, highlighting strong censorship around menstruation on social media, which ultimately leads to the downplaying of period pain or endometriosis. It also mentions the general disregard for women in medical contexts. The movie highlights this in a conversation between Jenneh, one of the endometriosis patients, and her boyfriend. Jenneh mentions that her boyfriend has to validate her pain and advocate for her in the hospital to ensure her treatment.

Nevertheless, the portrayal of women in “Below the Belt” omits crucial aspects of endometriosis patients and reinforces stereotypes about femininity and women’s role in society. Yes, the female characters featured as patients in the movie all have their different and individual backgrounds and stories. However, in terms of their attitude to the illness, all the protagonists show a very similar, traditional way of dealing with the diagnoses: The women accept their fate, wait for help, and are generally depicted in a passive and melancholic role. Of course, coping with endometriosis remains very individual, but the movie makes no effort to portray patients‘ coping in a broader sense and avoids showing anger or protest, thus painting a rather one-sided, traditional image of women. The inclusion of a character who takes a more active role on the patient’s side would certainly have brought an enlightening new perspective to the plot.

Portrayal of Structural Issues

“I've passed more healthcare bills than anybody in Congress - I hardly ever heard of this until my granddaughter explained it to me", Orrin Hatch, Republican Senator from 1977 to 2019 and grandfather of Emily, another movie protagonist, explains. As we know, the disease he mentions is neither new nor rare. Hence, such a statement raises questions: How come endometriosis has been neglected by politics, science, and society as a whole for decades? Unfortunately, the film skirts around those structural reasons behind our flawed perception of endometriosis altogether.

One scene, in particular, underscores this incomplete depiction of structural issues: Emily visits her grandfather in the Senate and briefly tells her story, whereupon the politicians burst into applause and, just like that, release funds to improve research in the area - almost a slap in the face to the many global activist groups who have been trying for years to draw attention to the field of endometriosis and the urgent need for more government support in this area of research, and who have not received this support from politicians. For obvious reasons, this is a negligent misrepresentation of what a political process actually looks like. What does it really take, apart from relatives in the US government, to focus society ‘s attention on a neglected disease? A crucial aspect that the movie fails to address at all.

Furthermore, although the movie refers to the “gender health gap”, it seems to be a half- hearted critique that does not dare to criticize the issue strongly. The gender health gap is presented and accepted as a sad reality, rather than, as the medical sociologist N. Hudson mentions, 2022, a product of “wilful ignorance” (2) that ultimately leads to the long-lasting ignoring and silencing of women’s voices. There is little questioning of why or how the gender gap still exists to such an extent, and why those in power – such as Orrin Hatch – have done so little in their careers to change it.

Finally, the documentary hints at issues within the American healthcare system, leaving viewers curious about the systemic reasons behind the inaccessibility of surgical treatments for endometriosis. Exploring the role of the healthcare system in perpetuating class, race, and gender inequalities is crucial to understanding how these barriers persist and how they might be addressed in the future. It is important to acknowledge that by focusing primarily on the experiences of middle to upper class women, the film inadvertently overlooks the broader scope of intersectionality. Endometriosis affects people from different socio-economic backgrounds, ethnicities, and gender identities. These intersecting factors can have a significant impact on one's ability to access diagnosis and treatment, which is another structural issue of great importance that is not adequately addressed.

Conclusion

Despite good approaches, “Below the Belt” misses a complete, accurate representation of endometriosis as a disease, those affected by it, and the underlying structural problems which strongly influence the lived experiences of endometriosis patients in general. The focus of the documentary lies elsewhere – on the personal stories of the four women portrayed in the film. In that respect, the film certainly does well. The four different stories of suffering are emotionally touching and will certainly help to raise more awareness of the condition. The main characters are given space to share their personal experiences and the audience is given an insight into their lives and stories of suffering.

And yet, there are structures behind every individual. Structures that influence our unconscious perception, influence our behavior and shape our society. A documentary that wants to draw a holistic picture of this complex disease, with its even more complex historically and culturally shaped social perception, has to touch on these structures more than just briefly. Of course, it is hardly possible to show the complexity of all historically developed social views in 50 minutes (although it remains questionable why the film is limited itself to this short duration). Nevertheless, much more could have been done in this respect.

Some serious questions remain: Why is so much weight given to the participation of politicians like Hillary Clinton, Mitt Romney, Elizabeth Warren, or Orrin Hatch? This is atypical for documentaries, which generally try to keep conflicts of interest at a distance. Could this have influenced the film ́s rather positive image of politics and the health system? And also: Could the strong focus on fertility be partly influenced by the film ́s official broadcast partners, such as the “Egg Whisperer” fertility clinic?

While certainly being speculative to some degree, the emergence of all these questions shows: “Below the Belt” did not manage to clearly distance itself from political influences and agendas, which undermines the movies‘ credibility. It also misses an opportunity to draw the public ́s attention more strongly to the complexities behind the purely personal stories - which would be so incredibly important, especially in the case of a multi-faceted disease like endometriosis.

References

As-Sanie et al., 2019, „Assessing research gaps and unmet needs in endometriosis“: https://www.sciencedirect.com/...

Nicky Hudson, 2022, „The missed disease? Endometriosis as an example of ‚undone science‘“: https://www.sciencedirect.com/...

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