By the time I was diagnosed with endometriosis, I was told that my disease had progressed to moderate organ fusion from scarring and re-scarring. Despite complaining of debilitating pain and concurrently being dismissed and gaslit for 10 years, my diagnosis came when I had stage 3 endometriosis. I was angry, dejected, and without favourable treatment options.
Unfortunately, when it comes to endometriosis and other disorders affecting women, symptom dismissal and delayed diagnosis are fairly common. As Samrina discussed in her article published last week for International Women’s Day, there is blatant gender bias within healthcare settings which leads to de-prioritisation and neglect of women’s health issues. As both a sufferer of endometriosis and a scientist, I frequently wonder how we can educate the wider public and health practitioners about the need for management strategies for a disorder that is incurable, misunderstood, and seemingly invisible.
My name is Seyi, and I am a clinical research assistant at SPI Lab, an artist, and new writer for Inspire the Mind. For this interview, I combined my interests in arts and health to shed light on reproductive disorders. With the help of my two creative friends *Sophia, a photographer and fine artist who was diagnosed with polycystic ovary syndrome (PCOS) and *Ava, a mixed media artist who was diagnosed with endometriosis, we discuss the realities of these disorders and how creative outlets, such as art, can bring visibility to our hidden struggles.
I decided to start at the beginning and ask how they detected their disorders. Sophia explained how she presented the tell-tale signs of PCOS such as cystic acne, abdominal fat, and mood swings, “These symptoms made me feel very self-conscious of my body growing up, especially since I didn’t know what was causing them. Once I was diagnosed it felt like a huge relief to have an explanation for everything.”
Ava agreed with feeling relief from her endometriosis diagnosis. Like me, she had struggled for years with painful and irregular menstrual cycles and eventually reached out to her doctor for help when the pain and mood swings became “too much to bear”. Ava also shared how the sustained pain and body disassociation from her endometriosis created secondary problems that she didn’t expect. She developed vaginismus, a pelvic floor disorder which makes vaginal penetration of any kind extremely painful if not impossible. While vaginismus is curable, it requires both physical (such as stretching and dilation therapy) and emotional work to overcome it. While discussing this aspect of her journey Ava was visibly emotional as she relayed the shame and judgement she has endured, “It’s made me isolate and avoid romantic relationships so I don’t have to explain my limitations or face rejection”.
Seeing how impassioned Ava became, I pressed her on what care she felt was absent from helping treat her endometriosis and vaginismus. She explained how her rehabilitation included no consideration of female comfort and pleasure, “A lot of this disorder is linked to the mind, not just the body, however doctors address vaginismus, and even endometriosis, on a level that feels emotionally sterile and mechanical, almost like I’m just a vessel.” She elaborated that in the context of a disorder which causes painful intercourse, female pleasure has never been discussed or prioritised in her treatment. Instead, everything has been addressed from the standpoint of being able to reproduce. Shaking her head she said, “It’s frustrating that a disorder that affects my body is only important in the context of preserving it for another body.”
Sophia agreed and stated how her PCOS is constantly blown off and reduced to “just a woman thing”. She added how people often forget that PCOS isn’t just a menstrual illness, but a chronic disorder affecting her hormones. Doctors didn’t give her much guidance on how to manage her symptoms, so she had to learn how to navigate it herself, “I do feel it has made me more intuitive and accepting of my body. I pay attention to what it needs at any given moment and honour that feeling. I feel that for better or for worse, I’m much more in tune with my body than the average person.”
Due to our disorders, the three of us have all developed an increased awareness of our bodies and their unique needs. As experts in our experiences and creative individuals, I asked what type of art they would create to inform individuals who don’t, or can’t, understand the mix of emotions, pain, and intuition that our illnesses have sparked.
Sophia immediately perked up with this question and smiled as she put together her idea, “I would use photography to show the externally visible symptoms of PCOS and painting to represent the more abstract internal manifestation. The painting would be a multi-layered flower where each petal has a distinct shape to symbolize the complexity yet interconnectedness of the reproductive system. To me, PCOS in an artistic sense means understanding that the female body, disorder or no disorder, is multifaceted and unique.”
I turned to Ava who jokingly admitted that she had a less concrete idea, but that she would want to create something that is multisensory, “Perhaps a figure of a human body that looks normal from the outside but feels different to the touch. I would try to capture this through using abstract and unexpected materials. My goal is to embody the idea of invisible illness where the audience would be able to interact with the art as an oblivious observer and then also experience some of the nuances of having endometriosis through senses beyond sight.”
Talking about our ideas created an air of lightness where we held more autonomy over the perception of our bodies and disorders. Seizing this sentiment, I concluded by asking Sophia and Ava why they think art is effective in expressing some of the difficulties we’ve faced. Ava explained the uplifting aspect of art and how it can shift her out of the fight or flight state. Sophia expanded on this, by adding how it explains an experience in a way that is universally accessible. Without the barrier of language, experience, or medical understanding she can bridge a knowledge gap through creative connection.
Although not everyone is an art enthusiast, we want to show how one of the most healing aspects of our journeys is creating a community where we feel truly heard and uplifted. Because while we may be navigating illnesses that are hidden, we want our experiences to be seen.
* names have been changed to maintain anonymity