Untangling a Gordian Knot of Symptoms

Genital dysphoria occupies my mind all the time now. I keep wanting to believe that, while genital dysphoria sucks, it is something I can grin and bear. That I need surgery, of course, but if I can’t get surgery I can still live my life. I want to believe this, but it’s not true. Genital dysphoria has tortured me my entire life, and as time goes on the pain gets worse. It is not tolerable at all; I’ve only put up with it this long by spacing out. I tune out my feelings and become numb to my body. My coping strategy has been dissociation. The problem with this approach is that, while genital dysphoria is a very localized problem, dissociation is a sledgehammer, not a scalpel. I can’t excise one feeling and keep the rest. I can only flatten my whole affect.

Emotional numbness has destroyed my ability to write. Contrary to popular belief, removing your emotions does not improve your ability to think clearly. Without an emotional component to prioritize and connect ideas, the mind becomes a jumbled mess of factoids divorced from context.

With dysphoria as the driving reason to numb out, my other health problems change from unrelated annoyances to dissociation’s reinforcements. My medical conditions become tools in my dissociation toolbox. The easiest way to make sure I stay numb is to increase physical pain. My dust allergies are the easiest way to stay emotionally numb. If I stop vacuuming, the house irritates my sinuses more and more over the course of several weeks. My sinuses swell and I get really thick postnasal drip. This makes it hard to breathe, especially when I sleep, which weakens my mind and my body.

Conversely, recovering from my dust allergy becomes a therapy session. If I vacuum the dust away, my sinuses stop swelling, and the congestion drains. Emotions flood my body as the sinus pain dissipates. If the emotional pain is bad enough, I get too scared to allow my sinuses to recover. Healing my body is too emotionally painful to bear. I stay sick, and stay numb.

If I’m not in any physical pain, my dissociation runs to PTSD for help. “Maybe a few flashbacks will keep her in line,” it seems to say, “Keep scaring her until one of her chronic health issues flares up again.” This tactic is less effective than it used to be. I’ve spent more than a decade in therapy–both individual and group–and flashbacks don’t have the same sting anymore. That’s when my body pulls out its weapon of mass destruction: Narcolepsy.

When most people think of narcolepsy, they think of fictional characters hilariously falling asleep at the worst possible moment. In Moulin Rouge, a narcoleptic actor falls asleep during rehearsal. How adorable! That’s not how the condition works in reality. Real-world narcolepsy is more Requiem for a Dream than Moulin Rouge. It destroys lives. Narcolepsy sufferers often remain undiagnosed, and every failure that could be directly credited to the disease is instead seen as a personal failure. The narcoleptic is “lazy”, “doesn’t apply themselves”, and would surely be more successful, if only they tried harder. Unknown to the people and institutions that judge them, narcoleptics expend more energy getting out of bed in the morning than most do during a 9-to-5 office job. They try and often fail to keep regular work schedules. No matter how hard one tries, one cannot overcome their own body chemistry through sheer willpower.

Apart from intense daytime sleepiness, narcoleptics also deal with a symptom known as cataplexy. Cataplexy is characterized by sudden muscle weakness brought on by intense emotions, such as anger, fear, or laughter. Depending on what muscles it affects, it can make you drop your coffee or fall over on the sidewalk. Even narcoleptics that don’t have any other medical or psychological problems will avoid emotional situations because of cataplexy. Avoidance works for many people, but in my case, cataplexy means my muscles can turn to jelly at any moment regardless of what I do. Narcolepsy and PTSD have a dangerously symbiotic relationship. All I need to experience cataplexy is a rush of intense emotion, which my PTSD can provide in ample supply. This means that even if I win the fight to get out of bed, my victory can be snatched away at any moment by a panic attack. My dissociative habits love this. It’s a built-in kill switch. If all of dissociation’s other defenses fail, it can use cataplexy to drop me to the ground on command.

This is a battle I can win, but not without help from medical insurance. Now that I live in a state with a Medicaid program that covers sex reassignment surgery, I can I see an end to the war. Victory will come from a two-prong attack: First, I find a medication for my narcolepsy. This is already underway. Second, I get SRS. The only reason I can get surgery covered is pure luck. I happened to move to a state that covers SRS, and that policy change only happened a little over a year ago. Life-saving medical treatment shouldn’t be a lucky break. It should be a given for all of us. If SRS had been available and affordable when I was 18, I never would have had to untangle this whole mess of life-destroying symptoms in the first place.

One thought on “Untangling a Gordian Knot of Symptoms

  1. I really appreciate these kinds of posts because your eloquent writing helps me contextualise my own dysphoria, so thank you. Also, I think you’re gonna win the battle! Keep pushing <3

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