{"id":308589,"date":"2026-03-27T07:10:00","date_gmt":"2026-03-27T11:10:00","guid":{"rendered":"https:\/\/electricliterature.com\/?p=308589"},"modified":"2026-03-27T07:54:49","modified_gmt":"2026-03-27T11:54:49","slug":"my-undiagnosed-chronic-illness-taught-me-to-love-sci-fi","status":"publish","type":"post","link":"https:\/\/electricliterature.com\/my-undiagnosed-chronic-illness-taught-me-to-love-sci-fi\/","title":{"rendered":"My Undiagnosed Chronic Illness Taught Me to Love Sci-Fi"},"content":{"rendered":"\n

To viewers grieving the death of Stranger Things<\/em>\u2014by death <\/em>I mean not the finale of the Netflix series this past January, but the show\u2019s unfortunate decline, after the third season, into a plodding, convoluted ghost of its former self\u2014let me offer something of an analgesic. Travel with me, if you will, back to the superb first season, where Winona Ryder\u2019s Joyce Byers, a broke, chain smoking, seemingly delusional mother, opens a can of paint and scrawls the alphabet onto a wall of her home. Joyce hopes her missing son will use the letters to communicate with her from the Beyond. Ryder\u2019s performance would count as one of the most convincing portrayals of insanity in recent screen history, if it weren\u2019t for one thing: Joyce is not mentally ill. Her son is <\/em>trapped in the Upside Down, and her love is so powerful, she\u2019s able to ignore the rules of logic and perceive what no one else can.<\/p>\n\n\n\n

I became a fan of Stranger Things <\/em>around the time I became, in my own way, Joyce Byers. To certain people in my life, I had recently morphed into a neurotic, monomaniacal woman. Not because I thought my child had been kidnapped by supernatural beings, but because I was convinced I was sick even though no tests could prove it. At 34, during my first year of a doctoral program in literature, I began to experience an electric-shock like pain in my pelvis. Sitting exacerbated the pain, so I bought a standing desk. Exercise beyond walking hurt, so I gave up biking, yoga, and rock climbing. Through regular physical therapy and rest, I managed the pain for several years. Then, in early 2020, my symptoms mysteriously worsened.<\/p>\n\n\n\n

By the end of 2020, simply getting out of bed was excruciating. I left my graduate program with my dissertation halfway done. From bed, I booked appointments with a new round of doctors: radiologists, pain specialists, pelvic specialists. Everywhere I turned, practitioners doubted me when I said walking and standing were excruciating. A psychologist whom I was required to see as part of my treatment at a pain clinic asked if my parents had treated me well, hinting the source of my symptoms resided in childhood trauma. In her assessment, she concluded, \u201cMs. Cutchin has some symptoms and behaviors known to be unhelpful for pain including: some fear, avoidant behavior, pain anxiety.\u201d <\/p>\n\n\n\n

When a physical therapist saw me limping, she said, \u201cAsk yourself, \u2018Why do I feel I have to walk like this?\u2019\u201d<\/p>\n\n\n\n

Worst of all, someone close to me hinted I was unconsciously refusing to walk because I \u201cliked the bed and the bath.\u201d<\/p>\n\n\n\n

Holed up in bed\u2014a bed that had become for some a symbol of my mental instability\u2014I began watching science fiction. I\u2019ve long been a fan of murder shows and spy thrillers, series in which the culprits are certifiably human and logic more or less carries the day. I binged The Americans,<\/em> The Bureau, <\/em>and Bosch<\/em>, along with some less illustrious procedurals. Then, for want of new programming\u2014it appeared my pain could outlast even Peak TV\u2019s flood of content\u2014I began to watch sci-fi<\/p>\n\n\n\n

Not only did sci-fi keep me entertained; it gave me strength. A recurrent trope of sci-fi is the woman who is not believed. There\u2019s Joyce Byers and her can of paint. Iconically, there\u2019s Sarah Connor (Linda Hamilton) in Terminator 2<\/em>, locked away in a mental institution because she claims\u2014accurately\u2014that cyborgs from the future want to kill her son. In Robert Zemeckis\u2019s 1997 film Contact, <\/em>based on the book by Carl Sagan, Ellie Arroway (Jodie Foster) tells a senate committee she traveled through wormholes to meet an alien disguised as her father. The (male) chairman points out that video evidence contradicts her account and accuses her of suffering from a \u201cself-reinforcing delusion.\u201d<\/p>\n\n\n\n

Not only did sci-fi keep me entertained; it gave me strength.<\/p><\/blockquote><\/figure>\n\n\n\n

Also delusional, or so a male colleague insists, is DCI Rachel Carey (Holliday Grainger) in the excellent near-future dystopian series The Capture<\/em>. When DCI Carey confronts a superior, Commander Danny Hart (Ben Miles), with her suspicion the UK government is altering CCTV footage in real time using deep-fake AI technology, he wastes no time gaslighting her. \u201cYou\u2019ve had a shock tonight, Rachel. Why don\u2019t you get some rest.\u201d If I had a dollar for every time I\u2019ve heard a male character tell a woman she needs some rest, I\u2019d be able to upgrade every streaming subscription to premium. In the German limited series The Signal<\/em>, it\u2019s a case of \u201cspace sickness\u201d that plagues astronaut Paula (Peri Baumeister), or so a dismissive colleague would have her believe. Aboard a space shuttle, Paula hears a signal she knows can only come from aliens. She records the signal, but when she plays the recording for the rest of her team, there\u2019s nothing on the tape. Her (once again, male) colleague, Hadi (Hadi Khanjanpour), who initially heard the signal, too, tells Paula she\u2019s unwell. \u201cGo lie down.\u201d<\/p>\n\n\n\n

Riddled with pain, facing disbelief from those around me, the stories of Joyce, Paula, DCI Carey, Ellie Arroway, and Sarah Connor brought me solace, and a shred of hope. I belonged to a genre of female characters who had to fight to be believed. In the worlds these narratives portray, women\u2019s claims are outlandish, otherworldly, weird, <\/em>and also true<\/em>. Eventually, each character finds someone who believes her. Sometimes it\u2019s a man, like Jim Hopper (David Harbour) in Stranger Things, <\/em>who learns to trust Joyce. Sometimes it\u2019s a woman or girl: Paula\u2019s most steadfast advocate in The Signal <\/em>is her disabled nine-year-old daughter, Charlie (<\/strong>Yuna Bennett), who, working with her father, figures out the time and place of the aliens\u2019 arrival and proves her mother right.<\/p>\n\n\n\n

Watching these films and shows between visits to doctors bent on dismissing me, I grasped sci-fi\u2019s genius: It taps into our culture\u2019s deepest anxieties about the trustworthiness of women. In our real-world political climate, when a woman speaks her experience, whether she\u2019s talking about sexual abuse, harassment, or illness, we wonder, Where\u2019s the proof<\/em>? And yet, our standards of proof are devised by the same systems\u2014legal, educational, medical\u2014built by men to protect male interests. In the medical system, imaging and other tests count as \u201cproof\u201d of illness or pain, but such tests screen only for well-researched diseases, and what we know about those <\/em>diseases largely comes from research on male subjects. No definitive tests exist for a host of conditions that predominately affect those assigned female at birth, like myalgic encephalomyelitis\/chronic fatigue syndrome and Ehlers-Danlos Syndrome. A woman with this kind of disease might as well be telling her doctors: Cyborgs are coming. Aliens have made contact.<\/em><\/p>\n\n\n\n

By exploring whose testimony counts as reliable, and on what terms, sci-fi provides a template for what ethical philosophers call epistemic justice. \u201cEpistemic\u201d refers to knowledge. In our everyday lives, we convey knowledge to others by sharing our expertise, by relating our experience, and so forth. When a speaker offering knowledge is dismissed because of who they are\u2014a woman, a trans person, a Black or Brown person\u2014they are wronged in their \u201ccapacity as a giver of knowledge,\u201d as philosopher Miranda Fricker puts it in Epistemic Injustice: Power and the Ethics of Knowing<\/a>.<\/em> The one who speaks loses out, but so does a community of hearers who would benefit from the information the speaker seeks to convey. Sci-fi dramatizes epistemic injustice and proposes a different way: We must practice epistemic humility by taking stock of our prejudices and admitting that someone who looks and sounds different than us might be right. <\/p>\n\n\n\n

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In the eyes of Western medicine, there is little stranger than a malfunctioning female or gender nonconforming body. According to The<\/em> New York Times, <\/em>\u201cWomen are more likely to be misdiagnosed than men in a variety of situations.\u201d A stunning 72% of millennial women report feeling gaslit by medical professionals, a Mira survey found. If you\u2019re nonwhite, it gets worse. Black women are less likely to develop breast cancer than white women\u2014but 40% more likely to die from the disease due to delays in diagnosis and care. Delays in diagnosis stem partly from lack of research into women\u2019s health. Until recently, women were considered inferior subjects to men in basically all research. \u201cThere are parts of your body less known than the bottom of the ocean, or the surface of mars,\u201d Rachel E. Gross writes in Vagina Obscura: An Anatomical Voyage<\/a><\/em>. On top of it all, there\u2019s medicine\u2019s age-old tendency to see women\u2019s maladies as psychogenic in nature\u2014think of the prevalence of the hysteria diagnosis in the nineteenth and twentieth centuries.<\/p>\n\n\n\n

Today, women are less likely to be told our pain or fatigue is \u201cin our heads.\u201d Instead, in a sophistry-laden twist, we are told our symptoms stem from a \u201cbrain\u201d gone haywire. According to the brain-based model of chronic pain, when symptoms persist more than three to six months with no obvious organic cause, the brain is at fault, or more precisely, a \u201cmaladaptive plastic reorganization in central pain processing circuits.\u201d A spate of recent self-help books and pain reeducation programs promise to teach your brain to unlearn pain via cognitive-behavioral interventions. The problem with these treatments is they fail to account for the instances when pain persists because doctors and tests miss its underlying cause. Around 70% of chronic pain patients are female. Women are more likely to suffer from underreached conditions like fibromyalgia, autoimmune disease, Ehlers-Danlos Syndrome, pelvic pain, Long Covid, Lyme disease, and myalgic encephalomyelitis\/chronic fatigue syndrome. Telling a woman her pain stems from a \u201cmaladaptive\u201d brain is today\u2019s version of \u201cit\u2019s just hysteria.\u201d <\/p>\n\n\n\n

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Given sci-fi\u2019s uncanny ability to channel and critique these medical biases, I\u2019ve put together a quiz: Can you tell the difference between a real-life sick woman and science fiction? The following statements were uttered either in a science fiction film or TV show, or in a real-life medical setting where a female patient came in complaining of physical symptoms. Circle the correct answer:<\/p>\n\n\n

\n
\"\"<\/figure>\n<\/div>\n\n\n

Answer key: B, D, F, H and J are from science fiction\u2014The OA, Manifest, Stranger Things, Terminator 2, <\/em>and The Lion, the Witch, and the Wardrobe<\/em>, respectively. A, C and I are from medical records shared with me by a female patient with Ehlers-Danlos Syndrome; E was uttered by the doctor of an Instagram user living with ME\/CFS and POTS. G is from my own life. A noted Bay Area pelvic pain practitioner insisted I download a pain therapy app that could, he said, \u201cre-wire\u201d my brain so I no longer felt pain. “The app will teach you that you can\u2019t use the word \u2018pain\u2019 any longer if you want to heal,” he told me.<\/p>\n\n\n\n

I\u2019m not saying mind-body tools aren\u2019t helpful in managing symptoms. In the early years of my pain, I did quite a lot of psychotherapy and embodied meditation. These tools helped, especially when it came to managing the stress of illness. By the time I became bedridden, I knew I\u2019d gone as far as I could with mind-body modalities. I told anyone who would listen I believed my symptoms had a biomechanical source, but, as time went on, I doubted that source would ever be found. After all, I\u2019d had an MRI, the gold standard for diagnosis of pelvic disorders, and it had revealed nothing. <\/p>\n\n\n\n

Still, I kept searching. For years, I\u2019d been hearing about a world-famous pelvic pain specialist in Arizona. Seeing him would mean traveling seven hundred miles and paying for the visit out of pocket. By early 2022, I was out of other options. A friend and I rented a van and drove seven hundred miles from our home in the San Francisco Bay Area into the Arizona desert listening to crime podcasts. Actually, my friend drove; I laid on a mattress in the back.<\/p>\n\n\n\n

The Arizona doctor took by far the most careful, thorough patient history of any provider I\u2019d seen. He recommended a round of pelvic floor botox, and, when that didn\u2019t work, he offered a diagnosis. <\/p>\n\n\n\n

When a woman speaks her experience, whether she\u2019s talking about sexual abuse, harassment, or illness, we wonder, Where\u2019s the proof<\/em>?<\/p><\/blockquote><\/figure>\n\n\n\n

\u201cAll the signs point to pudendal nerve entrapment.\u201d <\/p>\n\n\n\n

The pudendal nerve runs through the lower pelvis and innervates urinary, bowel, and sexual function. I\u2019d long known my nerve was irritated. But none of the pelvic specialists I\u2019d seen had raised the possibility it might be compressed. Compression, the Arizona doctor explained, doesn\u2019t show up on an MRI; the nerve is too small, too hidden. Compression typically arises from a traumatic injury, or repetitive stress. The year before the onset of my symptoms, I\u2019d biked one thousand miles down the California coast. The pressure of the bike seat against my pelvis caused scar tissue to build up around the nerve. To protect the nerve, paradoxically. <\/p>\n\n\n\n

It took 11 years from the onset of symptoms to receive the diagnosis. The treatment: a fairly straightforward decompression surgery.<\/p>\n\n\n\n

Pudendal nerve entrapment is an underresearched condition that affects\u2014you guessed it\u2014women more often than men at a rate of seven to three. Childbirth is a common trigger. Diagnostic criteria do exist, but none of the chronic pain or pelvic disorder specialists I\u2019d previously seen were familiar with those criteria. Pudendal entrapment isn\u2019t common, but it\u2019s not as rare as one might think, either. Studies indicate it affects up to one percent of the general population. Because pudendal entrapment lacks an ICD-code\u2014such codes are used globally to classify medical diagnosess\u2014insurance companies view decompression surgery as experimental and refuse to reimburse it. (In contrast, ICD-codes exist for \u201cSucked into jet engine V97.33X\u201d and \u201cStruck by turkey W61.42XA.\u201d)<\/p>\n\n\n