Health Sex + Body Positivity

Reshaping The Future Of Menstruation With The Biological Reality

The project was incubated at BeyondBlood, a peer support group founded by menstrual activist Anuhya Korrapati, where the power of reclamation and scope for catharsis of showcasing the lived experiences of invisible illnesses through photographs was recognized.

The Biological Reality is an auto-photography storytelling project that advocates for the marginalized menstrual health experiences of people from various intersections of society. The project was incubated at BeyondBlood, a peer support group founded by menstrual activist Anuhya Korrapati, where the power of reclamation and scope for catharsis of showcasing the lived experiences of invisible illnesses through photographs was recognized. Initiated by four members of BeyondBlood, comprising Anuhya Korrapati, Geetanjali Gurlhosur, Namrata Menon and Siri Sinchana, the project aims to create a patient advocacy network, promote body literacy and sensitize the medical community. The Biological Reality was recently pitched at The Good Pitch Local – Deccan 2021, where it was selected among other social justice films.

Anuhya Korrapati is a JRF doctoral scholar researching Menstrual Health. She is a PMDD warrior who uses her experiences for peer support and advocacy. As a Policy Fellow at YLAC, she was part of a 4-member team that drafted the Menstruation Benefit Bill 2018 for the office of Mr. Ninong Ering, Member of Parliament (Lok Sabha) and created an advocacy campaign for menstrual leave. She also sits on the Youth Advisory Board and Patient Insight Panel with IAPMD, USA and is the joint secretary at Indian Health Economics and Policy Association.

Disclaimer: While this piece voices several criticisms of the medical community, both in India and the world at large, this voice comes from hope for better healthcare that is inclusive, accessible and patient cantered. We acknowledge and are empathetic to the challenges that doctors and other healthcare professionals may face as a result of systemic challenges and our efforts are ultimately geared towards addressing some of these very systemic challenges. Like Angela Davis once said, “You have to act as if it were possible to radically transform the world. And you have to do it all the time.”

This interview has been edited and condensed for clarity.

About the Project

Q. Could you tell us a little more about the significance of the title of the film?

We wanted to ensure that the project title is not gendered. The project essentially focuses on disorders that primarily affect menstruators and there’s always a gendered connotation when it comes to menstruation. We came up with the idea of ‘The Biological Reality’, because all of these  experiences are very real and are ultimately rooted in biology.

Q. How did you identify the different intersections that you wanted to study through the process of The Biological Reality Project?

For the pitch, we were fortunate enough to have existing members in our support group, who could be featured . We were able to find a lot of intersections, from age to gender,  caste and income levels. We observed that religion also has a role in shaping the experience of menstruators. A lot of people who come from religious families, particularly Muslim women, have had a really tough time  getting  out of the house and getting  a diagnosis because it was so hard for them to speak about it at home. We want to inculcate more experiences and are going to put out a call for more participants. We  will ensure that they are compensated for their time.

Q. How do you think being the author as well as a character in the film gives the film a unique voice?

I think it gives me a little edge, to be a part of the project myself. From the point of view of being a participant, taking those pictures and trying to portray what I was feeling was a very emotional experience.  I was thinking of ways to show the nature of the invisible illness that I am living with. It was important for me to retain my narrative and not have an external gaze, which is why we have chosen auto-photography as the medium. Through auto-photography, we have been able to completely eliminate the external gaze that usually dominates narratives of illness and leads to distorted perceptions like inspirational porn. My own experience as a participant has helped me realize the importance of ensuring that we have a conversation on how we can provide a safe space for our participants to showcase exactly what they want to show.

Q. You also talk about how you approach menstruation through a lifecycle approach and move away from the dominant product-centric menstrual activism. Can you tell us more about this?

What is happening right now in menstrual activism is that organisations don’t have an exit strategy. They are creating a cycle of dependency. They are distributing pads, but no one is focusing on what the menstruator really needs. They are barely checking whether these products are even regulated.

We know that menstruation has a social taboo aspect and a cultural one, but we are trying to erase that by using a market tool, which is the product. If we’re trying to solve a social problem with a product, it’s not going to happen. That is why we need a life cycle approach, because then we are not saying that menstruation is something that needs to be managed.  We are not saying that menstruation is those three to seven days of bleeding that occurs. We are saying that it is a repeated lifelong process that includes a multitude of changes that occur from menarche to menopause. Menstruation and its related experiences change widely throughout the life of a menstruator. By acknowledging this we need to come up with unique solutions for every menstruator, whether it is with respect to product or policy or healthcare. We need to stop looking at menstruation as a sign of fertility. Menstruation has been recognized as the fifth vital sign of health but medicine still looks at it as a sign of fertility.

On the Challenges of Queer Menstruators

Q. What were you able to learn through TBR about gender dysphoria in the context of menstrual health?

When a trans person approaches a doctor, one of the most common things that happens is that they straight up refuse to treat the patient. They may also abuse the patient and diagnose them with gender dysphoria. The patient can come with a headache, a broken leg or anything and the first thing they’ll ask is “What are you”?  It’s so insensitive, the constant invalidation and trying to figure out someone’s gender. The conversation always shifts to gender dysphoria and needing to visit a psychiatrist. It’s absolutely heartbreaking to hear that when one goes for period cramps or similar issues. I think it’s extremely triggering for patients which is why they don’t go to the doctor sometimes. They try to take over-the-counter medications and move on.

Q. How can we de-gender menstrual health in our day to day lives to validate the experiences of trans and other non gender conforming people ?

I think the first step is to understand that menstruation is a biological process that has been gendered, particularly because of colonial structures. It was not previously gendered in many cultures. We need to completely free ourselves from the shackles of the menstrual health cycle being a “woman’s issue”, which is a patriarchal concept. If menstruation is what makes you a woman then I’m sorry, I don’t think you understand what gender is.  And while many people argue that it’s a small percentage of trans-men who menstruate and that we shouldn’t go out of our way to remove the focus from adolescent girls because they are such a vulnerable population, I would beg to differ. Because one does not know who is out and who is not. Sometimes an individual’s sense of gender identity may get stronger around the time they start menstruating. The move forward is not only trying to be inclusive but also integrating  and centering them in the conversation. We need to give  people at the margins of menstruation the centre-stage in menstrual activism today.

We’re also doing the bare minimum in terms of menstrual health education. We’re just teaching students how to use pads. We need body literacy if we want to inculcate increased health-seeking behaviours related to menstrual health. Without body literacy we are going to have people coming to the hospital after years and years of struggling with pain and then realizing it’s not normal. If I had the awareness as a 13-14 year old that what I was going through was not PMS, I would have gone to a doctor and gotten diagnosed right then. I probably would have had  a much better quality of life. The amount of trauma I’ve inflicted on myself because of undiagnosed PMDD is unimaginable. We need body literacy and we need better doctors.

Q. In a country where a lot of medical professionals still recommend conversion therapy and so called corrective therapies what are some systemic changes that are required to promote more queer inclusive menstrual healthcare? 

In current medical practice, doctors are very much guided by the biomedical model. We need to move towards the biopsychosocial model. Only by doing that can we re-establish the importance of the patient-physician relationship. Doctors also aren’t being sensitized during training. All corporates have gender sensitivity training and sexual harassment training. Why are we not sensitising our doctors? Why are they not taught  about the social determinants of health?   Why are they not taught to confront the biases that they hold as doctors? These are  really important questions we need to ask ourselves. The medical community is very biased, both in the clinical setting and the research setting. When it comes to disorders like PCOS and PMDD, they mostly take cis gendered women as their participants. Some studies take only heterosexual cis-gendered women, as if sexuality has anything to do with conditions like endometriosis. And the same research practices transfer to clinical guidelines and policies. So when a trans man comes to the clinic for PCOS, the doctors themselves are confused about what treatment they can safely take forward with their patient, because some trans men despite being on T get their periods and there’s not a lot of research on it for doctors to do something about it.

On Medical Gaslighting and Medical Trauma

Q. What do you believe makes medical professionals disregard so many people’s complaints in the medical field?

It comes from sexism and medical bias. They view women as weak, attention-seeking, hypersensitive and that is why they don’t take us seriously. They also rely too much on anecdotal evidence. “You know this one patient she walked in and she was lying. “ Okay maybe she was? But that doesn’t mean that everyone else is too. The anecdotal evidence may also be a bias of how they viewed the patient. Recent research points to something in medical settings that is known as benevolent sexism, where the doctor, on account of the “goodness of their heart” does not want to put female patients through extremely risky procedures and so they skip it, even though it’s necessary. And benevolent sexism is only discussed in academic settings, but there’s nothing happening in policy and practice.

There was a study published by a doctor who while diagnosing women with  rectovaginal endometriosis, felt that they were unusually attractive. The researchers  lied to the research participants to gain their consent  The study was then published with conclusive evidence that women with  rectovaginal endometriosis were judged to be more attractive. It was retracted but it went through the process of  blind peer review and ethical approval. It was also published in a journal. Not one time did someone stop and think, “Wait what the hell is wrong with this paper?”. That tells you a lot about medical research, which is also done by rich white old men (or by the frameworks that they have put forth).

Doctors also medically gaslight you saying “You’re really just anxious, you’re a hypochondriac, you care too much. Are you eating well? You know the stress is really getting to you.” And the whole process of visiting the hospital and waiting and waiting for a diagnosis, only to hear every doctor say the same thing is so demotivating.You don’t want to go back to a doctor again because they are not helping you. It happened to me when I was undiagnosed. Doctor after doctor said the same thing: “You’re not eating well. You’re not sleeping well. Are you having too much alcohol?” But no one ever wanted to acknowledge the PMS, much less the PMDD. They don’t want to take a minute and look at the history and other information and so there’s more and more undiagnosed menstruators just struggling. And  the quality of life is so bad, when a simple diagnosis and an even simpler treatment can change that. There’s so much misinformation. There’s so many doctors who’ve blocked me on Twitter just because I proved a point. I wish Twitter could hand out an award for being ‘Blocked by Most Number of Doctors’.

Q. What are some ways people can cope with the impact of medical gaslighting such as medical Trauma, so that they can continue to advocate for their own health as well as become active voices of lived experience?

It is very difficult. Some people feel like it is their responsibility and that they have a sense of purpose. After suffering for many years and doing better, we think that we can help people so that they don’t have to go through what we went through. But that sense of purpose does not make the process easy. It is still triggering and it takes years to process all the trauma because progress towards healing is not linear.

But being a patient advocate is also about learning a lot more about ourselves and our journey while also learning to help others. That can be very cathartic because one is not rationalizing anymore and saying “Maybe I deserved it”. There’s a lot of unpacking that happens in patient advocacy. It’s like we’re going back in time sometimes to advocate for ourselves when we couldn’t do that, so we’re unlearning that and we’re advocating for other people so that they can have better outcomes than we did and probably faster.

One of the biggest things that I’ve learnt about medical trauma, is not about letting it go. Or it’s not about being angry. But it’s just understanding that you didn’t deserve it. That’s it. Nothing else. Just understanding that you didn’t deserve it and people who come after you deserve better than this. I don’t think I’ve ever forgiven a doctor who caused me medical trauma and I don’t think I have to, to get past this. That’s the thing about medical trauma, just knowing that you deserved better.

The Move Forward

Q. How can we redefine the patient-physician relationship so that the rights of the patient are protected?

I think the greatest solution is to get a patient advocate. In countries like the U.S. and the U.K., people get certified to be patient advocates. One can take a patient advocate with them when visiting the doctor so that they have someone to advocate for them. This person knows a lot of medical procedures and a lot of information similar to what the doctor knows and can ensure that the patient understands and is included in the decision making process. At Biological Reality, we are training patient advocates right now for PMDD. We want to be able to do it at a larger scale for a spectrum of disorders and across the country. Hopefully this patient advocacy program becomes really huge in the next 5 to 6 years and every menstruator can have access to a patient advocate and actually get informed consent with respect to the treatment choices that they are making. Another way to do it is to have an independent patient advocate who is posted at the hospital and can ensure that these conversations happen.

Again, the most easiest solution is to sensitize doctors. To look at their patients, speak to them beyond their charts, beyond a number, beyond an ultrasound, because there’s a person there, there’s a story there. They keep saying “Don’t lecture me, I’m the doctor. Your Google search is not equivalent to my medical degree”. But your one hour lecture on PMDD is not equivalent to my 8 years experience of living with PMDD and listening and connecting with other people who have PMDD. So who here really is the specialist right? When doctors choose a speciality, we need them to have conversations with patients with lived experience in that area. That’s the best way to learn and retain the patient-physician relationship that we’re absolutely lacking everywhere.

Q. As someone who’s on the youth advisory board of the International Association for Premenstrual Disorders, what are some global developments that you may be observing regarding period advocacy and menstrual health?

Right now the entire PMDD research is patient-centred and patient-focused. It is for the first time that this is happening. In fact, a lot of doctors and researchers who are researching PMDD always say that the patients have created the space and the opportunity. They say that they just have a seat at the table, and that they need to ensure that the experiences of patients are the focus.

I was part of the IAPMD patient insight panel where they even asked the patients “Where do you think we need more research on PMDD?” and now they’re focusing on that. We had a focus group discussion about our experiences, where they also tried to uncover how PMDD may be related to complex PTSD. Being part of that panel and listening to story after story, it made me so emotional. I thought that I was so strong but within the first two minutes I started crying because when the first panelist was answering the question that was asked by the researcher, I felt like she was answering on my behalf. And the researcher held space for us. I cannot wait to see how the research is progressing. When it comes to endometriosis, you never listen to the doctors or the pharmaceutical industry. The patient advocates are always fighting against the pharmaceutical industry.

The patient insight panel came through with the aid of the PCORI (Patient-Centered Outcomes Research Institute) grant and the idea of the grant itself is that all research must be patient centric. And IAPMD has created a great support network. I am also a trained peer support provider for IAPMD, where they’ve taught us how to deal with crisis situations for people with PMDD,  especially when it comes to suicidal ideations. They have trained us on how to de-escalate these situations, and come up with a safety plan and a support plan. Everything is patient-centric, whether it is the support that they receive, whether it is the research or even advocacy. Patients are the centre of every conversation. I think the future is bright for PMDD research.

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