Dr. No Love or: How I Learned to Stop Worrying and Talk About My Ovaries.
This title is misleading. I’m terrified to write this for a few reasons, but I’ll get to those in a second.
Last weekend I fractured a rib coughing — you can laugh, I would too if it didn’t hurt to do it — and had to go to the ER to get an x-ray. Unfortunately, I am veteran of the ER. In part because I’m potentially Canada’s clumsiest human, but mostly because I suffer from a chronic condition that causes internal adhesions and the flare ups are occasionally enough to send me to emergency. I like to joke that I’ve embarked on a country-wide tour of Canada’s best and worst ERs. So when I walked in to emergency last Sunday morning I was prepared. I had a book, almost twenty hours of content downloaded from Netflix on my iPad and had given myself the pep talk I always whip out before facing the dragon that is triage and treatment. It goes something like this: This is no time for your stoicism, Langer. You show them how you feel. Use your face to tell them how much pain you’re in and don’t let anyone tell you it’s all in your head! I call it the Reverse Coach Taylor. Anyone who deals with chronic pain and has gotten used to navigating life by partitioning pain signals into a sort of creepy pain cellar that they only open and explore when they’re in a position to let their defenses down will know what I’m talking about.
To my utter surprise, I didn’t need any of this stuff. Warily I approached admissions and told them I was afraid I had cracked a rib after I’d heard a snap the night before when coughing and had trouble breathing and moving my arm. She was sympathetic. It was strange and lovely. I almost hugged her, but it would have hurt. Also awkward. She sent me over to triage where they took my vitals and directed me immediately through to fast track (where they do x-rays and set broken bones.) I thought to myself: Oh okay, so fast track will be where the real waiting begins. I started thinking about which movie I would watch while I waited, and how to make sure the intense pain I was feeling showed as I was sitting there. I didn’t have to do that either. The anomalous experience continued and I was seen by a doctor who sent me through to x-ray in under five minutes. All in all, I was out with a diagnosis and treatment plan in under an hour. Wait… what? It was the quickest visit I’ve had to the ER in years, and they were compassionate and understanding.
It has taken me a week to process why I was so angry.
Finally it dawned on me. I wasn’t angry because it had gone so well this time, I was angry because of all the times it hasn’t. For every time I’ve sat in that bloody (pun not intended you sly devil) waiting room, rocking back and forth for hours, only to be treated like an opioid seeking junkie and turned away with a recommendation to take tylenol.
I have endometriosis. It totally sucks.
Endo crash course: It’s an autoimmune disease that causes your endometrial cells to grow outside your uterus and latch on to your other organs, occasionally gluing them together. Oh yeah and the cells bleed during your menstrual cycle. Cool. It has four stages, it can be excruciating, and I’m one of the lucky one in ten women to play Ripley to its Alien. (Fair warning, joking is one of the only ways I can talk about it without losing my mind, so buckle up.) If you want a more comprehensive understanding, you can read more about it here, here and about other women’s struggles with it here. There are no hard and fast fixes, and treatment is almost always a hot bed of controversy.
I’ve likely had this since I was 16 but was diagnosed in my mid 20s alongside a jerk of an ovarian cyst (nicknamed Blinky) that required removal. I waited months for surgery until finally I pleaded with the surgeon to move me up the priority list. She asked me if it was really affecting my quality of life. I told her it affected a significant part of every single day. Reluctantly, she bumped me up, and it was only during a post op follow up that she finally admitted: I understand why you were in so much pain. You were a real mess. No shit Sherlock. Basically all my lady bits were having a giant orgy/rave/dance party in places they shouldn’t have been. I’m positive there was dubstep. They’d glued themselves together, pulling apart a little bit every time I moved or twisted, hence the agony. I wanted to be surprised but all I felt was validated. More than that, annoyed that it took so much empirical evidence for her to believe me. Since then I’ve had two more surgeries, one with even more mess inside, and I continue to fight some version of the above battle on a regular basis. Almost like a cycle… (Shakes fist at moon.)
Before I continue, I want to be very clear that I am currently a patient at one of the leading pelvic pain clinics in the country, and am following their proposed treatment suggestions. It’s my second time through their clinic. To that end, any medical advice that well wishers may have tucked up their sleeve, I’ve likely tried, discussed with my doctor and rejected on their recommendation, or isn’t legal in Canada yet. I’m pushing really hard for studies that research the effect of Skittles on this disease, but so far no dice.
Now I know that ERs are not designed to deal with chronic pain. I also know that maybe on the morning of the rib event I lucked out and it wasn’t busy yet. I know that I could have just as easily sat there for five hours waiting for more critical patients to be seen. If this was a one to one comparison, I’d be a lot less mad. But I’ve sat in those waiting rooms countless times, rocking back and forth in agony, so forgive me if I don’t accept that this was all based on circumstance. I go to the ER because something in my level of chronic pain has changed so much that it’s become acute, scary, and impossible for me to function. I don’t make the decision lightly. But the second someone hears the word ‘chronic’ every red flag goes up and they somehow morph it into ‘junkie’ even when I’m not there to ask for painkillers.
You’ll notice I have a fairly pessimistic (realistic?) view on the relationship between female pain and our medical system. To illustrate why I feel justified to take this stance, here are three common responses I get when I discuss my condition with a new doctor:
- Doc: So you have cramps. Me: Sure… if by cramps you mean a velociraptor covered in barbed wire and lit on fire, gnawing through every fiber in my midsection whether I’m having my period or not.
- Doc: This is really a long term problem. Have you discussed this with your GP? Me: No, we’d rather just stare longingly into each others eyes and brush each others hair while listening to Ace of Base like it’s 1995.
- Doc: Why don’t you just get pregnant. I hear that helps. Me: Dies.
I’ve died a thousand deaths trying to get people to take me seriously. On the other hand, I’ve died a thousand more trying to prove to people that I’m fine and fully capable of doing my job.
Most of the time I’m caught in an infinite loop. The Möbius strip of my life with two mutually exclusive truths: I am okay. I am not okay.
In the last year (with many thanks to my incredibly supportive husband who has given several doctors the kind of stare that could melt the even Terminator’s poker face, who has also advocated for me on multiple occasions and is often the only reason I’ve been treated) I’ve decided that it’s time to talk about it. Out loud. Consequences be damned. Also I’m currently on a script deadline (that I will meet!!) for an awesome new show, so anyone who wants to challenge the concept that I’m capable of doing both? Come at me, bro.
So back to the part where I’m afraid to talk about it. If I have medical proof — legitimately some of the grossest pictures of organs misbehaving that I have ever seen — then why am I so afraid to talk about this condition and its effect on my life? Well, just like my relationship with avocados, it’s complicated and the timing has never seemed quite right. These are the biggest reasons that publishing this sends me into an anxiety spiral:
- I don’t want people to think I can’t do my job. This is one of my top concerns, always. It’s taken me years to break into the career that I love, and it’s one of the best parts of my life. It’s still early days for me and the idea that I could mess it up is paralyzing, daily. I love working. (I hate working sometimes too, but as we know, love trumps hate in all things.) If I had to stop doing what I do because some wanky little cells don’t know where they belong in my body, I would lose my mind. A friend recently asked if work stress makes the challenges of this disease worse. I answered yes immediately… but then applied the caveat that it also makes it so much better. I could either sit on a lily pad and breathe through the pain, or I could throw myself into my career and live my life to the best of my ability. (No judgement to anyone who’s chosen the lily pad — don’t think I haven’t considered it.)
- There’s no good way to talk about this in a professional setting. Or at least not yet. When I was a server, I would generally remain completely tight lipped about it around my bosses, until medical necessity (like requesting time off for surgery) forced me to tell them what was happening. They’d had no idea it was even on my radar. When I started working on a TV series it took me a year and a half to bring it up, and in the end it only came out as an analogy for a storyline we were working on. I almost shit my pants waiting for the reaction I had built up in my head— needlessly, because my awesome boss just said he knew someone else who had it, and then wrote it into the show in solidarity — but the fear is always that you’ll tell someone and subconsciously they’ll either put you in the Whiner and Complainer category (like the typical professional victim who shows up every day and answers the question “How are you?” with a giant sigh followed by all the banal reasons their life sucks.) Or worse, they’ll write you off as someone who is Difficult. In TV, your entire job is to make it easier for other people to do their jobs. As a staff writer, you want to make things as smooth for your showrunner as possible by offering great idea pitches, writing solid scripts, and taking on tasks they don’t have time to do. This means that the main reason people won’t hire you is because they’re afraid you’ll make their lives harder. Being labelled “difficult” is the kiss of death when it comes to staffing. Incidentally it’s a label that’s most often reserved for women and is often unfairly applied in an emotional context as a reason not to hire a woman. So compacting that with “Oh by the way, my uterus has gone rogue and often sends out scouts that bleed at will like some constant unseen horror show happening below my waist…” not exactly prime material for the CV. Over the past year I’ve gotten slightly more comfortable talking about it, but generally keep things as light and as jokey as possible so no one starts avoiding me in the halls like it’s Old Testament times and I should be sent outside the camp to finish my ‘sickness’. Nah.
- Having proof is meaningless. I have an arsenal of medical photos and documented surgeons notes and my medical history in my bag every time I go to a new doctor or hospital. It has never helped. In fact it’s led me to a painful realization: when it comes to women’s pain, facts don’t matter. At least not when you’re talking to the gatekeepers. Eventually, if you’re loud enough, and live close to an urban centre where extended treatment is available, and live in a country that covers extended treatment, you can get a diagnosis. Eventually you’ll be heard but holy crap on a cracker is it exhausting to get there. My surgeon at the pelvic pain clinic is amazing. She and the staff there have devoted their careers to making sure women with these ailments are seen, heard, and treated. They do tons of research and she is a complete whiz in the OR. But the wait list after referral hovers at 6–8 months long, and OR time is generally reserved for the most critical cases. Also the dumpster fire you have to wade through to get to the referral stage is insane.
- Unless you’re my doctor, I don’t really want your advice. Just like all areas of life that don’t require the layman’s opinion, many people are chalk full of “helpful” solutions to fix the problem. It’s like a volcano of well-meaning suggestions. They get that look in their eye, pity meets internet-informed and before I can dive roll out of their vehicle or duck and cover, it all just comes burbling up in a rush of “Have you tried yoga/acupuncture/diet/exercise/going gluten free/sensory deprivation/counselling/kale?” Yes for most, not on your life for a few. I know people want to help, and I do my absolute college best to smile and accept that for what it is, but there are only so many times I can tell people I’m probably allergic to kale (and exercise.) Having just started tweeting cautiously about this, I’ve been shamed, advised to join support groups, and medical-splained to about my own condition. I know that by telling people about my medical status, I put them in a position to either be sympathetic and well-meaning, or to awkwardly say nothing while trying to find an appropriate way to respond. It seems unfair to them, and watching that struggle is almost as painful as the adhesions, so mostly I stay quiet.
- Lastly, it makes me talk about the kid issue. I won’t dwell on this one other to say that my relationship with the topic of procreating is intensely complicated. As a woman in my 30’s it’s also something I’m constantly reminded of on every social platform where the baby thing is front and centre for a lot of my friends and family. Yet another cycle I can’t avoid. Cute kid. Whoah that’s a lot of photos. Unfollow. Check back in to torture self with more cuteness. Eat a donut. I vibrate between repression, irrational anger, occasionally being fine, denial, and complete emotional meltdown on the topic. I also firmly believe that it’s nobody’s business should we decide not to spawn. Or to try to spawn. Or to procure someone else’s spawn through legal and socially accepted channels… so just butt out, k? (Sorry, I had some coffee, I’m cool now.)
So, there it is. Now you know. The whole damned internet knows! (Or the at least five people who may decide to click on this, and the two that have made it this far — thanks Mom!) Really, we’re no further ahead than we were before I opened my mouth, except that I can stop being afraid of it because by posting this, I am aware that it’s already out there. People can make their assumptions about me that I can’t control. That’s on them. Maybe when I post cryptic pictures of hospital bracelets on my locked Instagram account, a couple more people will understand why I’m there. Ultimately it doesn’t really matter because none of this is actually about me — despite my belief that EVERYTHING is about me — it’s really about our systemic challenges in dealing with women’s pain. It’s about our fear of being honest about our vulnerabilities and our failures. It’s about trying to control other’s perceptions of us. It’s about acknowledging that challenge does not reduce our capability to exist, create, work, and live, it just offers a different way to do it. And finally and most importantly for me, it’s about admitting that the following truths can coexist.
I have endometriosis. It sucks. It’s not okay. I am okay.