[cw for medical narrative, and talk of gender dysphoria]
I don’t remember when my pain went from being only during my period to being a semi-/daily occurrence.
I do remember the moment in reading Harry Potter and the Goblet of Fire over Summer 2000 when I realized that I could best describe my life through terms of the cruciatus curse:
Moody raised his wand again, pointed it at the spider, and muttered: ‘Crucio!’
At once, the spider’s legs bent in upon its body; it rolled over and began to twitch horribly, rocking from side to side. No sound came from it, but Harry was sure that if it could have given voice, it would have been screaming. (189-190)
Having been diagnosed with endometriosis at 19 after experiencing varying degrees of symptoms for over a decade, any diagnosis felt like a blessing. Unfortunately, due to a rare (and independently debilitating, lbr) form of migraines I soon found out that I’m a non-candidate for the majority of first-line interventions for endometriosis. This means that prior to being diagnosed with my specific migraine disorder at 21 my endometriosis treatment plan was super fucking awful (ie. daily migraines for literally months at a time), and since being diagnosed my treatment plan has consisted of pain and lifestyle management. It’s sure something else to have a doctor tell you that at 21 years old there’s “nothing else” they can do except try to keep you comfortable for the rest of your (long ass–because endometriosis is in itself not life-threatening) life. That rather than attempting to treat symptoms, Quality of Life is now the primary goal.
Now while the biomedical aspects of endometriosis are of great importance to many people (ex. a treatment plan for people who are unable to undergo hormonal treatments would be superb, just sayin’), for me the most crushing aspects of this disease exist socially/emotionally.
Endometriosis as incredible silence.
I remember a time when my parents took my childhood pain/s seriously. When it seemed plausible to them that the amount of pain I was expressing was congruent with the amount of pain I was feeling. Years of doctors visits (“she’s [sic] perfectly healthy–just needs to lose some weight”) and appointments with psychiatrists/psychologists/counselors (“panic attacks are happening in kids younger and younger, now”), however, will wear even the most ardent of believers down.
Eventually I learned to perform Health through Silence. William Cheng describes this performance quite aptly in Just Vibrations: The Purpose of Sounding Good: “I role-played as someone of sound mind and body, getting through […] with a mix of painkillers and pure adrenaline.” While this was a wonderful childhood/early illness coping mechanism as it kept me safe from codification as a Liar, as an adult with a diagnosis it has become a paranoia trap. In keeping the brunt of my symptoms a secret from those around me–even those who I know care for my wellbeing–I often still find myself trapped in self-imposed cycles of absolutely fucking unnecessary suffering [*].
Endometriosis as an absolute fucking fun suck.
Due to the waxing and waning of my symptoms it’s not often advisable for me to plan things too far in advance. Everyone has a ~planning comfort zone~, and for me that zone exists in measures of hours. As shown in the picture above that doesn’t mean I don’t make plans well in advance (I know about camping trips usually months in advance), but those situations where I Can’t Know how I’ll feel for an activity can honestly be Planning Nightmares. Not only is time lost in activities not attended, but also in activities attended and rigorously planned for–refilling prescriptions, getting documentation for said prescriptions so that they’re not questioned, formatting an emergency plan, etc etc etc.
On a more daily basis: in a 24 hour period I may get 4-6 hours of sleep, and of the approximately 20 remaining hours I need to keep checking in with my symptoms: On a scale from 0-10, how bad is the pain that extends from my ribs down to about mid-calf? Am able to walk? With or without my cane? Can I go down stairs? On my own? Should I use an elevator instead? If I go to class, will I be able to sit for the entire class time? The bumpy bus ride home?
Although it may seem obvious to some, it really is difficult to pay attention to what’s going on around you when it feels like your legs are being ripped off [*].
Endometriosis as gender dysphoria.
There exists this constant reminder of the disconnect between my embodied experiences as a trans queer and social experience as someone who is still generally coded as a woman. So when I express that I believe it is absolutely necessary and important to center women in the experiences of endometriosis, I cannot stress enough that my experiences with endometriosis are not the experiences of a woman.
The invisible, chronic pelvic pain I experience is one of the single worst aspects of/triggers for my dysphoria. There is an immense guilt I feel[*]/have felt for accessing women’s resources in treating my endometriosis, and for a very long time this guilt manifested as trying to convince myself that I Must Actually Be A Woman if I continued to access these resources (this is bullshit, of course–no one should be denied the best medical care possible regardless of gender). Thankfully I’m now in the process of gaining access to the specific medical interventions which I believe will be beneficial in mitigating my dysphoria, and no longer require access to the (women only) chronic pelvic pain management clinic I formally attended.
Endometriosis as inherent.
If there is a conclusion to be had from this post, it’s this: we’re always shaped by our experiences, but how we’re shaped is more up for question. I’m in the process of writing… like… at least 1 research paper for sure based on/in the concept of Eve Kosofky Sedgwick’s reparative reading from Touching Feeling: Affect, Pedagogy, Performativity, and I’m trying to find more ways to incorporate that method of reading into My Life As A Thing. In Touching Feeling Sedgwick references Melanie Klein’s paranoid and depressive positions:
For Klein’s infant or adult, the paranoid position–understandably marked by hatred, envy, and anxiety–is a position of terrible alertness to the dangers posed by the hateful and envious part-objects that one defensively projects into, carves out of, and ingests from the world around one. By contrast, the depressive position is an anxiety-mitigating achievement that the infant or adult only sometimes, and often only briefly, succeeds in inhabiting: this is the position from which it is possible in turn to use one’s own resources to assemble or “repair” the murderous part-objects into something like a whole–though, I would emphasize, not like any preexisting whole. Once assembled to one’s own specifications, the more satisfying object is available to be identified with and to offer one nourishment and comfort in turn. Among Klein’s names for the reparative process is love. (128)
I know that I’m capable of loving myself as a person who experiences endometriosis. As Joë Bousquet wrote, however: “My wound existed before me, I was born to embody it“–I am who I am today because of this disease. While I Doubt that I’ll ever be capable of loving my endometriosis as “murderous part-object,” I can only hope that I (and you! those of you who also deal with this dang disease) am always capable of remembering that it is but one aspect of My Self as a greater Whole [*].
[*] I’m Working On It
- Cheng, William. Just Vibrations: The Purpose of Sounding Good. Ann Arbor: U of Michigan Press, 2016. Print.
- Kosofsky Sedgwick, Eve. Touching Feeling: Affect, Pedagogy, Performativity. Durham & London: Duke U Press, 2003. Print.
- Rowling, J.K. Harry Potter and the Goblet of Fire. First ed. Vancouver: Raincoast, 2000. Print.