It’s been a wobbly week, health limping along on training wheels. Yesterday was great, today is awful. I have endometriosis, which for me means very painful and heavy periods. Endometriosis is a condition where the tissue that lines the womb (the stuff that pumps up, ready to support a foetus if you get pregnant, and then every months sheds as a period) grows elsewhere in the body, often through the digestive system, latching onto organs and tendons like weeds growing where they shouldn’t. This ‘weed’ reacts to normal monthly cycles the same, shedding and bleeding into the pelvic cavity where it can’t escape. This can make a mess of scar tissue and adhesions, and can cause awful pain if there’s nerves around those areas. Not everyone gets pain, it depends on where it happens. It can also destroy fertility.
I’ve managed for the last 10 years by taking a medium dose of the oc pill, on a continuous basis, that is, not taking the sugar pills except for three short breaks a year. That means only three periods a year, only a week long, and not severe pain. Before I was diagnosed and started treatment, my usual period lasted about 14 days a month, involved extremely heavy bleeding, and severe pain with at least three days in bed. I have vivid memories of trying to work at childcare and manage my periods, weeping with pain in the bathroom. I wasn’t diagnosed until I was almost 20, thanks to a male family doctor, an uptight religious community that treated normal functions as secret and shameful, and myths about what was normal. I’m angry as all hell about this, I suffered a lot as a teenager and was mostly treated as weak and lazy by people who didn’t know better.
Rose and I are now in pre conception care, gearing up towards pregnancy possibly next year. This January I stopped taking the pill so my normal cycle is back. The great news is that all the signs are good that the endometriosis has been contained and even reduced over the years, so my fertility should be intact. The difficulty for me is that I can no longer schedule my cycle around work and other commitments. It’s also frustrating because our cultural taboos against talking about this stuff mean that whenever I’m ‘just sick’ again I tend to come in for a lot of advice about not over doing it and tut tutting about needing to manage my health better. The truth is that none of that would help. What does help (me) is sleep, forms of pain relief that reduce muscle spasms, such as Naproxen Sodium, or orgasms, heat in the form of hot showers, baths, or wheat packs, and avoiding cold foods such as ice cream. My mood is usually very low and I find that I’m often teary and depressed. One or two days stuck at home very quickly leave me feeling lonely and miserable. When I’ve been under a lot of intense stress as a young person, I’ve had an almost psychotic response to the loneliness, secrecy, and pain of these experiences, such as nightmares that the pain was a demon clawing me apart from inside.
It shouldn’t be a big deal to talk about it. Many people have difficulties around menstruation, fertility, sex, digestion, and all the areas of health that we don’t talk about. It’s harder to get funding for cancer research for less sexy cancers. It’s harder to explain health problems like these to friends and employers. There’s a kind of bemused and patronising tone taken to people who ‘fail’ to live up to our expectations that adults can manage digestion, menstruation, and sexual health without anyone else ever knowing about it. Many of us are struggling with issues like these! I’ve seen women in such intense pain with endometriosis, they wind up begging for morphine in emergency rooms, and have to carry a letter certifying their condition so they are not mistaken for drug addicts. I can tell you these women are not just lazy or making a big deal about something everyone has to deal with! I’ve talked with women who have suffered through a long, painful struggle to get pregnant, too sick to work, and too embarrassed that something as ‘minor’ as menstruation causes them such distress to tell anyone but their closest friends about what’s going on.
These things are not that unusual. Embarrassment about them helps noone, especially not young people who are so particularly sensitive to shame and isolation. Every day, people are managing infertility, chronic digestive problems, recurring thrush, uti’s, and other infections, immune issues, and allergies to toilet paper, latex, lube, sanitary items, and their own skin and secretions. All of us are trying to find ways to manage with some sense of dignity, to still feel attractive when we dress up for a date, even if that means making 15 minute stops to pee, finding an outfit that conceals a colonoscopy bag, or trying to discretely manage menstruation while using the men’s bathroom as a f2m transperson.
Human bodies can be fragile, and leave us very vulnerable to shame. I generally don’t talk about my physical health challenges, mostly because I don’t want to make other people uncomfortable. I’m an activist when it comes to mental health but still very influenced by ideas that I shouldn’t embarrass anyone else, and shouldn’t complain about physical health problems. I’m feeling a bit fed up about those ideas. Shame is for people who have done something to feel bad about. I just happen to inhabit a body that is lovely and fragile, and that has issues in some areas like menstruation that we don’t, as a culture, like to acknowledge. I know I’m not alone and I’m tired of feeling alone. I’m not any less of a person, I have nothing to feel ashamed about. Being sexy and adult isn’t, in my opinion, about being able to maintain mystery about our bodies. There’s a humility about inhabiting a body that doesn’t work perfectly, intimacy about being forced to acknowledge our shared vulnerability as people, at having our lovers or house mates understand these needs and at times care for us. No one is healthy all the time. As much as people might like to pretend otherwise, whether as children, in our age, or due to sickness or disability, we all at times will need help and support with intimate functions and for issues we find confronting and embarrassing. All of us will love people who have these experiences and struggle with feelings of shame, ugliness, and degradation. We can let this isolate us, or we can rise above it and embrace the tenderness and humour of having imperfect bodies.
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