Endometriosis Awareness Month
Andrea Ford asks 'what would you change about public awareness?'
March is Endometriosis awareness month! If you see yellow around, it might be people proudly raising the public profile of this very common but poorly understood condition, whose sufferers are too-often silenced. At the end of each interview I conduct for my study on patient and clinician perspectives of endo, I ask what the person would like to see changed about public awareness of the disease. In honour of March Awareness month, I want to share some of the answers.
Some generally wanted to bring it out of obscurity -- just having people know what it is would be a good start. Yet they wanted the portrayals of it to be more diverse and reflect the range of ways the condition is experienced. "The kind of standard image of an attractive slim woman clutching her stomach, sometimes with a hot water bottle, is a bit clichéd." (This standard image is always of a white woman, I would add). This person continued, "Also I think it can be a lot more nuanced than pain. The pain can feel very different at different times as well." Someone else expressed frustration that it's commonly classed as "bad period pain." When she tells people she has endo, she said "you kind of see people thinking, alright, so you have a bad period now and again… There’s so many people that think it is solely related to the days, the calendar days that you bleed in a month." Some people have pain only during their cycle, and for others unfortunately there’s just pain all the time.
When people are not knowledgeable, "you protect yourself by not really saying a lot about it, because you feel people don’t understand or don’t want to listen anyway. So it’s a kind of double-edged sword." Another person said she wished "they would invent a way of sharing pain" - not just so people without pain would empathize, but so people experiencing it could compare and communicate about it. What does "normal" even feel like? This person always thought she didn't have pain during sex, a common issue with endometriosis, until she really tried describing things with a close friend and realized she had simply considered the pain normal. "When you don’t talk about something you don’t even have the words to describe it."
Another person thought there is "an over-emphasis on it being a fertility related disease," even though that is one of the factors that was upsetting to her personally. She thought that "a huge proportion of the stories… tend to focus on women who have struggled to have children. And that’s heart breaking and those stories should be told but, but it affects single women as well. It’s almost feeding into a narrative that, oh yeah, the very worst thing that can happen is not having kids, and for a lot of women that will be the single worst thing about having endometriosis, but it’s important to recognise that it affects people in other ways too."
Others wanted to specifically raise awareness about the impact it would have on your capacity to work. "I think improving public perception around chronic illness would be amazing. The diagnosis isn't going anywhere but that doesn't make you useless. You can still function just fine most of the time but having an understanding that [being ill] does happen, and not feeling guilty about it and not feeling like you still need to perform at the same level." She described how an old colleague "had really severe pain with her periods. She really struggled to work, would just be sitting there not really functioning, brain really fuzzy. And we had a male manager. These were things we would discuss together but she never felt comfortable saying to him she needed a day off, or he would say well you've already had a day off. And he was a really nice guy, not a horrible manager, but he didn't appreciate the impact it could have on someone." Another person said it would be great to have something like "period leave" for women who have these severe symptoms.
Another common theme was education, starting with the 'period talk' at school. "The boys and girls grow up to be GPs and doctors," and it would help if they are aware from a young age of what periods should and shouldn't be like. It reduces stigma and shame if boys learn about it as well. This person continued, with her characteristic humor, "Well, at the end of the day, not all of them will be gay. Some of them will have to pass a tampon to a woman in the bathroom. That’s the reality. If they want to live with a woman then they’re going to have to accept that this happens to women." Having a supportive partner is something that really marks the difference for people who have endo and are thriving. Education should also happen at Universities because "that’s when I think you start to realise your life is different from your peers.’ You’re not going out as much, your periods are much heavier, you know you’re not coping as well, your workload, you’re struggling, you’re getting depressed. If you had somebody there then to step in and say, what’s happening? Let’s talk about this."
On a similar note, another person really wanted young girls and women to have a lot of proper support when they start menstruating. "I think that’s a key moment when things can go wrong and then you just spend a decade chasing what you think is your own insanity." She continued that this could ideally come from mothers, though they often have a negative view of menstruation themselves. When I asked what a great introduction to menstruation would look like, she talked about an acquaintance whose mother "baked a cake and called over two of her best friends and they all celebrated. And they were saying congratulations… They made her feel like it’s not a bad thing. It’s like something to look forward to. Oh, you’re a woman now, you’re one of us. And let’s have cake. I think it’s great." She thought that if menstruation was understood to be empowering and fantastic, instead of something embarrassing and shameful, then it would be more obvious that being in so much pain and hating the experience means something is wrong, instead of assuming (as so many do) that this excruciating pain is normal.