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“If you don’t see a doctor, we’re through.” This ultimatum from my partner of 15 years cut through my pain and fear and made me realize I finally had to get help.
Her declaration came after months of suffering that began when I found myself far from home on a train from Buffalo to Albany in such excruciating pain I couldn’t stand upright. When, after six long hours we arrived in Albany, instead of getting medical care, I had a work colleague help me to my hotel room and pour me a tumbler of whiskey. I downed the whiskey with a handful of aspirin and prayed for the pain to stop. My job was intense. We were traveling throughout upstate New York in an all-out campaign to pass a bill that had the potential help thousands of suffering patients, and yet ironically, I just couldn’t imagine stepping away to take care of myself. Somehow, I managed a full schedule of lobbying the next day, and then, despite the recurrence of this pain every few weeks, I continued to work insanely long hours for the next several months until we succeeded in passing the bill.
When I finally looked up, I was not only in pain, I was exhausted, out of shape, and living off a diet primarily of gin, whiskey, and fried chicken. I had become my job and little else, and it was making me sick.
Until I got sick, I had prided myself on being a “tough” butch, who could manage the “all in,” rough scrabble world of social activism. I was emotionally tough too, I thought. For me, being a “real butch” meant: I shouldn’t cry or be emotionally expressive; I shouldn’t be vulnerable or emotionally available, I should avoid asking for help at all costs, I should not seek medical care unless death seemed imminent. I should work my guts out, and I should never ask for directions.
I’m not sure where I absorbed these ideas about butchness and masculinity. Maybe from the men in my life or maybe from watching too many episodes of “Dirty Jobs” and “Deadliest Catch.” What I do know is that there just aren’t a lot of butch role models, and, as Adrienne “Aj” Davis notes in her wonderful piece, To be Black, Intellectual and Butch, many of us are left with the task of being our own role models or muddling our way through this thing called “butchness.” Maybe it was simply the absence of butch role models that led me to fall back on traditional forms of masculinity.
My feeling trapped by masculinity is not for lack of knowledge, either. I went to an all women’s college where I was steeped in feminist thought and critiques of hegemonic masculinity. I read Butler, Halberstam, Connell, and other feminist, gender, and queer theorists. I even started a group more than 20 years ago for butches and trans men to explore issues such as male privilege, sexism, and internalized misogyny. So, I get it. I’m certainly not naive about the hazards of masculinity — the gender binary and masculinity are social constructs that hurt us all. And yet that knowledge didn’t protect me from internalizing some of masculinity’s nastier features.
My resistance to medical care wasn’t just about masculinity. As a butch woman, who is often mistaken for a man, my experiences with the healthcare system have rarely been positive. I’ve been met with incredulity, hostility, and curiosity. I’ve been asked inappropriate questions, offered tests and procedures I neither needed or wanted, and been the object of “teaching moments” where other providers have been called into the exam room to marvel at my appearance and ponder my hormonal make up.
Ironically, for me, the condition that was causing me excruciating pain was “female trouble” (endometriosis), and it forced me to face my fear of the medical system and get help. By some great good fortune, I found my way to an excellent, queer holistic practitioner who immediately “got” who I was and intuitively understood all the fear and apprehension I brought to the exam room. That positive experience and the ones that followed changed everything. Over the course of two years, I completely transformed my diet, stopped working insane hours, and started prioritizing my own self-care. Without surgery or the medications that other doctors had recommended, I am completely pain free.
But even more transformational than changes to my physical health has been learning to question those parts of my butch identity that were contributing to my illness and diminishing my life. With expert guidance from the same holistic healer, I’ve learned to let go of those toxic conceptions of masculinity. I’ve even joined with others to take the conversation about the constraints of masculinity online by starting a Facebook group called the Emo Masculinities Collective.
As it turns out, being forced to stop, get help, and start taking care of myself was just about the best thing that could have happened. I am discovering who I really am when I set aside conventional tropes about masculinity and my antiquated ideas about what it means to be a “real butch.” It turns out that I am a tenderhearted, sensitive butch, who cries at sunsets and stops to stare at the flowers growing out of the sidewalk, a butch who can’t kill so much as an insect or watch violence on TV. I still like motorcycles, weight lifting, and pickup trucks; I also like poetry, meditation, and prayer. I’m learning that there is courage in vulnerability and that asking for help is a sign of strength. My heart has opened to a world full of pain, but also to a world of tremendous joy and beauty.
There, I’ve said it. I’m not tough… not even a little a bit. I’m not giving up my suits and ties, but you may find me drying my eyes with my handkerchief. How queer is that?
Thank you for writing this, though I am not fond of the reference to Jack it’s okay to use slurs H.
I liked the begining of this but the more it went on the more it sounded like an ad for their holistic healer than a actual article. Like those fake sponcered post other websites have. Also too short but im a long read snob i suppose. I feel like a english teacher. Has potentianl but needs to be fleshed out more. C+ you can do better then this. I beleive in you.
Interesting comment.
I have now read this article 3 times, and I just don’t get why it sounds like “an ad for their holistic healer.” This is a woman talking about her journey, lessons learned along the way, and what resources she found to help her. That is called sharing – not selling.
And I found her very respectful of not pushing what worked for her on anyone else. Just a personal journey to health.
Finally, grading a middle-aged woman on they way she chose to tell her own story is disrespectful and condescending. Seriously.
I have just been diagnosed and am struggling with the condition alone. Would you mind if I reached out to you to chat about how you are managing symptoms and attacks?
I have it too. After years when my digestive symptoms, if not my pain, were controllable with acupuncture, I eventually went with surgery to reach my current nearly pain-free state. Please don’t feel inferior if you can’t find a perfect holistic healer to work with you — medical doctors can help too. Best of luck!
Fellow sufferer here. I’m sorry to hear that you’re struggling and feeling isolated. You’re not alone, and I hope that as you research and reach out online, you find both helpful info and a sense of community and belonging. There are so many of us!
If you’re interested, here’s how I manage: I had a Mirena IUD for a while that helped my symptoms IMMENSELY — I didn’t menstruate and had no pain. But it caused other side effects I decided I couldn’t live with (notably, it killed my sex drive) so I had it taken out. I wish I could have kept it, because it was a great solution aside from that. Laparoscopic surgery officially confirmed the diagnosis and got me to the point (pain-wise) where I was able to make some lifestyle changes (more fresh/high-fiber foods and water, less alcohol, more exercise, more sleep) that help me manage it on an ongoing basis.
For managing symptoms during an episode, I try to make sure I have self-care items/activities lined up. I no longer reach for a glass of whiskey (I’m definitely femme, and this was my panacea of choice for years too! go figure). I try to have cartoons or favourite movies to watch, heating pad at the ready (including disposable ones if I need to go to work), noise-canceling headphones, herbal teas, favourite foods, permission to myself to bow out of social activities. When the pain gets very very bad, I try to do the same things as I do for panic attacks: breathing exercises, touching very cold objects, mindfulness practice… anything to help remind myself that the pain will pass.
I hope you find ways to manage your symptoms soon. A diagnosis is a big step toward finding what will work for you. You’re not alone! <3
Thanks for replying. I am trying to read up on the condition, but find that it gives me panic attacks which is less than ideal. My doctor has just put me on the pill to see if running packets together would help, but I have now been bleeding for 4 weeks and have a constant dull ache in my tummy. I live in the UK, and our health service is wonderful, but it is a little slow so everything takes time. I have a GP appointment next week and I am going to ask to be referred to a consultant that has been recommended to me.
I think I am mostly annoyed that I have had to cancel a date tonight with a cute girl as I feel so rubbish! My endo is c*ck blocking me!!!! Argghhh!!
Hi Laura-
Sorry to hear that you are struggling. I’d be happy to chat. You can reach me through my website juliecnetherland.com on the contact me page.
Jules
Hi Laura,
I’ve got it too and am in the UK if you want any info about the sort of thing that is available on the NHS – just message me on here :) (I don’t think I could work if didn’t have the treatment I’d got on the NHS, and definitely couldn’t have afforded it in the US. The NHS is incredible). But yes DEF get referred to your local hospital either general gynae clinic or if they have one a pelvic pain clinic.
I’ve just had my third surgery for it – which was to fix a bunch of problems it has caused. My pain management is pretty good at the moment – a combo of mirena coil (LOVE my mirena!), drugs that worked on my pain (nortriptyline – the 9th one I tried) enough to make me able to do exercise again and that exercise (swimming in particular helps) seems to work best. I’v also made changes in my life to prioritise my pain management, and realised that i probably needed to change careers etc.
My current biggest tip for managing pain spikes at work etc (apart from desk pharmacy) is deep heat roll on – it’s so good and doesn’t smell like usual deep heat.
I had a really really rough few years of debilitating pain and it was so frustrating and upsetting and really affected my mental health – so yeah if you want to chat just let me know. I’d also recommend looking at Endometriosis UK – they have support groups in most towns now, and I’ve only been to one meeting but there is an active facebook group which is really helpful when you’re having a shit day, or if you’ve been admitted into hospital to see if any of the other women are in too etc as well as lots of advice and info about treatment and drugs and negotiating the maze of referrals. I would say though, that although getting pain management is a long journey etc and can be frustrating having the diagnosis is a really really big step and a although horrible, the diagnosis is a positive thing too, in a way. Opens lots of doors to treatments and answers and hopefully the beginning of things getting better.
x
(did NOT realise this was such an essay! sorry!)
I enjoyed reading through this. When I was young I was known as being “too sensitive.” In an attempt to toughen up, I tried holding in emotions, instead of crying. This resulted in me developing aggression problems; I would just explode and punch walls, threaten people, etc. Ironically, it was a cis straight man who taught me it was okay to show emotions other than anger, that crying doesn’t make you any less masculine.
I also did stupid things when I was a teen, like refusing to take pain killers after hurting myself in weight lifting (I know, dumb right?)
I guess you’re right there, in that we don’t have very many butch/boi/stud role models, so some of us end up following the toxic kind of masculinity we see in the average cis man.
Of course nowadays, people comment on how my personality and voice doesn’t match my style of clothes, but I’m done trying to be hyper masculine in attitude. I even squeak when surprised which seems to throw people off. Totally not masculine lol. :)
Glad you found a way to deal with your endometriosis! I’ve also been diagnosed with this but I had to eventually give in to my long-time aversion to taking meds (spec. hormones) and finally took my (blessedly feminist, queer-friendly) doc’s advice to get a Mirena IUD. I was lucky enough to be living in New York at the time where IUDs are handed out like free candy and while it was maybe the most painful few minutes of my life getting it inserted (and about a month of cramping every day afterward), I’m now the most pain-free I’ve been since I started getting my period! I would definitely encourage anyone with intense cramps to try holistic things but know that there’s definitely no shame in going on birth control or getting an IUD. No one deserves to be in pain like that every month just because they have a uterus that apparently hates them.
“My heart has opened to a world full of pain, but also to a world of tremendous joy and beauty.”
I love that. Thanks for this piece.
My fiancee is also a tender-hearted butch with endometriosis, though with me she certainly wore her heart on her sleeve with me from the beginning!
She struggled with the pain for years before getting diagnosed. I researched endo as a molecular biology student and wrote my undergrad thesis on the disease. The more I studied endo in the lab the more I was certain it was what she had, and we decided she should go ahead with treatment.
She underwent a laparoscopy this year and was found to have one of the worst cases the surgeon had ever seen, with endometriosis growth within the peritoneal cavity and down into her legs. They removed what they could and she’s now on hormonal BC to manage the condition. These past five months she’s been pain free and definitely happy about it. I think it’s one of the bravest things she’s ever done.
Thanks for this, I totally feel you on the “I should know better and yet toxic masculinity somehow creeps into my daily life” level. I didn’t feel allowed to claim a butch/MOC identity for myself for a long time because I was too sensitive, not dominant enough, etc. I’m trying to be a bit easier on myself now, like just because the movie made me cry doesn’t make me not butch, but it’s really hard. So down for more tenderhearted butch role models <3
I love this. Thank you
It’s so refreshing to come across an article on endometriosis on here! All the support groups I found on Facebook seem to be very heteronormative, as are the attitudes of the medical professionals I’ve seen for my endo-like symptoms.
Meanwhile, I’m so happy for you that diet and lifestyle changes helped :) It seems like a lot of people end up needing the surgery and/or hormone treatment.
I loved loved this
Thank you for writing this! I also just got diagnosed/and operated this past week and am happy to find some queer perspectives on this. Would love to talk about what changes you made in your diet.
Hope the surgery helped! My diet changes were focused on reducing inflammation. I cut out (or at least way down on) gluten, sugar, alcohol, and caffeine. I eat a lot of anti-inflammatory foods, like turmeric and ginger. I also take some supplements that seem to help. And I really tackled stress by cutting back on work, working out, and taking up a regular meditation practice. Of course, all of this was an incremental process. I really believe that every body has different needs, but this has been working for me.
I truly appreciate this “coming out” article – not just about being a tenderhearted butch but about having the never spoken of endometriosis. It is a lot to put into the world with the hopes you don’t get run down. Thank you for your generosity and courage.
And I find you inspiring that you have transformed your life so completely, allowing yourself a life outside of work. That is a journey I am on, and it is hard to find my identity and value beyond employment. I am sure many of us get our importance from work, but I want it from every part of my life.
A special thanks for sharing your beloved health-coach guru with me. Your grace and strength is a beautiful thing. Gorgeous actually.
The only thing that helps my endometriosis and makes it so I can function while having my period is the drug Pyridium. It is actually used primarily to treat bladder pain from UTIs. When I first started having symptoms of endometriosis I knew that the pain was unlike any pain from cramping I had ever experienced. It was much sharper and felt like it was immenating from my bladder. So I started taking pyridum we had around the house and it is absolutely the only thing that helps with the pain, I would say it’s an 80% reduction in pain. I believe that my bladder and uterus have become stuck together, but in order to confirm this I would have to undergo exploratory surgery and for now both I and my doctors are happy with the symptom relief I get from the Pyridium, as the bladder pain is only present during my period. So if you are suffering from sharp severe incompasitating pain during your period and ibuprofen doesn’t touch it, you may want to consider Pyridium. Also, don’t let anyone talk you out of trying it, my sister, who is a nurse, and mother both thought the bladder theory was crazy, turns out it’s not. Many people just never make the connection between the pain and their bladder. I wear contacts FYI and have had no issues with the medication dying my lenses, if you look into this medication you will see why I tell you this. Hope this helps!
Yeah bladder stuck to uterus sounds totally legit. I’ve just had several bits of my body unstuck from each other – if it wasn’t so awful the power of endometriosis would be really impressive! Really glad you’ve found something that works for your pain.
THIS IS EVERYTHING!!
I might write a more profound comment later when the feelings have worn off enough that I can just describe them.