Men always want me to share more. From my first boyfriend on. Craig slurred at me in a dorm room hallway that I’d never really let him in, never talked about my feelings or had a single serious talk with him throughout our senior year of high school.

I shook his grip from my arm.

“But you didn’t either?” It was a question how I said it, and stepped back against the damp wall. We’d been broken up for months, the way I’d expected us to when high school – and what I saw as our role for each other—was over. I was less drunk than him (always) and couldn’t quite follow his logic.

But, then, it wasn’t actually a logic I could cross into: at its heart was the belief that I should open myself to him, and fully. My thoughts along with my legs. And because I hadn’t, he explained to me, I was “super fucked up,” around relationships. He teetered and slumped to the floor.

“You never even gave me a chance to know you,” he looked up, his lush eyelashes in full effect. I was fucked up because I didn’t open: instantly, easily, for him. We’d known each other since we were 12, but he felt he’d never gotten enough of me. He wrenched up his face and twisted toward the floor, and so, across the narrow hallway from him, I sunk down too.

“I’m sorry?” I said, hoping that would end it, but regretted it as soon as I spoke.

In The Body in Pain, her classic text describing the philosophical and spiritual features of pain, Elaine Scarry addresses biblical depictions of the inside and outside of the body, and the dynamics of the divine that operate between. Scarry observes that when a person in the Bible resists God, or belief in God, “…the withholding of the body…necessitates God’s forceful shattering of the reluctant human surface and repossession of the interior.”

I can’t help but see here a masculine God, one that refuses any scenario in which a person refuses to fully give themselves over. As Craig did, pulling at me in that dorm hallway for something he felt he wasn’t getting.

It wasn’t actually a logic I could cross into: at its heart was the belief that I should open myself to him, and fully.
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It’s not fair, though, to make this only about men.

“He just wouldn’t open up to me,” Cara sighs. “We spent a whole weekend together and I barely feel like I know him.” I’ll readily admit it’s not always the case that the one prying open is gendered masculine: the penetrating gaze of women and queer people all around me bores towards the deepest darkest secrets of the people we want to know.

“I want him to let me in.”

“She’s hiding herself from me.”

“I want more of you. All of you.”

As if there was only one way in to where we’re trying to go, and the tunnel is to blame for not being open.

One weekend camping with friends in the Sierras, we laugh the whole time and I feel closer to them than I have to anyone in a while. My eyes tear and my throat is sore from laughing about our sad and weird experiences learning sex at summer camp from older kids, the stupid things we’ve said while trying to be cool. We are academics, therapists, entrepreneurs and artists—adult people whose intelligence (emotional and otherwise) I respect. But in this weekend I get a break, mostly, from speaking this intelligence. And in these conversations that I’ve sometimes termed more surface, I feel something more like closeness. More like trust.

“Yes, because we’re trusting each other to know we’re not stupid,” Ellie says from her perch on the granite boulder. “We don’t have to spend the whole time proving we’re smart or emotionally articulate, or have good politics, or have worked through our childhood shit…” She trails off and scratches the back of her leg, reaching awkwardly around to where a patch of calf got ravaged by mosquitos. I look away instinctively, not wanting to witness her weird body position. But then I look back.

“…the pose of awkwardness is very dangerous, because at this post-feminist moment one should be a top, one should win, etc,” writes Eileen Myles in “Long and Social.” Myles is speaking here about the ways in which their own work is “a bad recording” of lived experience, as opposed to the careful curation of a memoir. They term this position of “bad recording” dangerous for women expected to be getting things “right,” topping the narrative, so to speak. Myles points here also to the precarity of power by noting their refusal to top. This choice to maintain an awkward pose (a crouch, perhaps) leaves their narrative-body vulnerable to risk. The awkward narrative allows for others to also enter and also make claims upon the truth. The awkward body leaves the story open, incomplete.  

I want to see this awkward body – in part because I have it. I’ve been managing chronic illness and pain these last few years, and lately doctors have focused on a problem with my hormones. The OB-GYN says too much estrogen in my body is forming the cysts on my ovaries, and the herbalist says my diet has too many estrogen-heavy foods, that I need to eat less of everything on the list she hands me.

“It’s important not to feel defeated if the diet changes don’t fix everything right away,” she tells me. “You are managing a chronic condition.”

I’m still trying to understand what exactly this means: how to explain that I’m incapacitated by endometriosis pain one month, but the next am out late and energized every night. I’ve been turning to sick, crip and disability theory to try to better understand – even though of course I know these are not all the same. What I’m trying to understand between them is how to manage a condition that is largely invisible much of the time, how to manage something intentionally or inadvertently pushed out of view.

But: “…disabilities are not exactly ‘visible’ or ‘invisible’ but intermittently apparent,” writes theorist Margaret Price in “The Bodymind Problem and the Possibilities of Pain,” “…a better metaphor than vision for some kinds of disability might be apparition.” I latch immediately onto this, the way “apparition” flickers and returns at unpredictable times – often frightening those present when it appears.

The idea of chronic illness as apparition also feels soothing after years of trying to bore down into the core of how to fix this, how to find one thing I can do that will eliminate my symptoms – and failing, failing to nail it down. Sometimes I feel better but I don’t know why. I get up from bed, then later fall over, over and over, never over. I stumble on my words when anyone asks how I am and I try to explain.

“Clumsiness might provide us with a queer ethics,” writes Sara Ahmed in Living a Feminist Life. “Such an ethics attends to the bumpiness of living with difference, so often experienced as difference in time; being too slow or too fast, out of time.”

The apparition of chronic illness is also “clumsy.” Because my body moves clumsily in pain, but also because it is out of time, unpredictable, inconsistent. It does not respond well when asked to be consistent or reliable. (“Sick time is always escaping the institutional technologies invented to contain it,” writes Anne Boyer.) It does not respond well when asked to be fully seen and understood. And it does not respond well to normative relations, queering the sense of my relationship to others in care, in attraction, and attractiveness: always incomplete and refusing the happy ending.

The idea of chronic illness as apparition also feels soothing after years of trying to bore down into the core of how to fix this, how to find one thing I can do that will eliminate my symptoms – and failing, failing to nail it down
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This is why I began with my teenage boyfriend. Because what’s awkward and clumsy if not one’s first relationship, one’s first times attempting sex? Especially in a relationship where I was primarily attracted to the idea of sex, the performance of relationship and its accompanying teenage drama: not to any kinds of hot sex we were actually having. I didn’t have the knowledge or communication skills at the time to re-direct or explain this, and so remained stilted in what I told him, how our bodies moved together, and the way, ultimately, we broke up. I guess we should stop dating now, I bumbled on his porch steps the week before we left for college, and bolted away across his lawn into the night.

He remained angry at me for years for this breakup, and for refusing to “let him in” on what I had been thinking, wanting, needing. Things I didn’t exactly know myself at the time. And I’ve come to understand the ableism beyond the misogyny in his anger, the insistence that a body and mind should even be available to seamlessly open.

But also I am grateful now for the clumsiness that surrounded us then, my hormonal body ineptly attempting to work alongside another. I remember us in basements pretending to listen to Dark Side of the Moon on a couch we couldn’t figure out how to arrange ourselves upon. Our limbs not knowing where to go against one another, yes, but also the emotional inelegance, how I rarely knew where to look or what to say.

“I considered how one cannot continuously manage one’s emotive surface and, mostly, that this lack of control is something to be grateful for,” writes Caryl Pagel. So I am grateful to my teenage self, the self that stuck her ass in boys’ laps while dancing and didn’t know what it meant, genuinely shocked later by their desire. I am grateful to the awkward teenage self who avoided intimacy wherever possible, terrified of risk and then on occasion spilling it all, with Smirnoff Ice.

And not just me but him, her, them, us: crouching underneath bathroom stalls because we’d locked ourselves in and didn’t know where else to go but the sticky floor. The sense that we did not need to blast one another open in any masculine-, female-, God-like or therapist-way, because, really, we already were shattered (a la Scarry) open, slithering on the floor and around in our hormones. Our unpredictable bodies our first hint that we might be that way—forever.

This is how I’ve found myself embracing the clumsy, as a body half performed and half messy, half closed and half open. A person allowed to open only sometimes, a body willfully aware of change and potentially shifting states. To be clumsy is not to be fragile: it is to know that one is breakable, and to live (speak, interact) knowing this.

Clumsy might come in any gender, but because they’re the ones I use, I’ll use she pronouns here. She’s been a beacon to me when I’m in pain, and a beacon to me when I try to explain my illness. She lets me shrug: “it’s hard to know how I’ll feel next week.” She lets me refuse to talk about it when I don’t want to. She performs gender as she is available: she lets me spend half an hour on my eyeliner and then say fuck it, and smear it off.

She wants to be seen, but at the same time refuses to be seen completely: a position I’d want, for any person—the understanding that a public presentation doesn’t necessarily mean she wants to be taken, opened or entered entirely. Or that she’ll be available in this same way tomorrow. Her hormones, her blood, her gender, her feelings, her laughter: none of it demands to be shattered or unwrapped for consumption.

I summon the spirit of clumsy from my teenage self, picking nervously at the pimples alongside her mouth as she tries to end the conversation with Craig on the porch. She doesn’t know how to break up with someone gracefully. Her legs are half-shaven and bumpy, and her shorts are the wrong thing to wear in this late summer chill. She blurts and runs. She’ll learn more later about what people want to hear. But for now she doesn’t know what to say, and I love her for it.

CW: Mentions of self harm

I carefully walk up the wooden stairs, gripping the handrail. The scent of jasmine is sweet as I cross over to open the Dutch door. The sound and smell of the studio are overwhelming: the tang of green soap and vaseline, the clattering buzz of the machines. There is art everywhere: watercolors in bold primary colors, books on the counter filled with potential options. As I settle in, the razor flicks over my skin. I watch the fine blonde baby hairs of my arm shaved off, golden motes dancing in the sunlight. “You ready?” the artist asks. I involuntarily clench, but smile. “Born ready, baby.” Then the needle touches my skin and I relax into the pleasurable pain of being tattooed.

I got my first tattoo at 18, much to my parents’ chagrin. I don’t remember when exactly it was that I fell in love with the idea. Growing up in the punk scene, I couldn’t think of a specific person whose inked skin made me suddenly decide my skin needed to look similarly, mostly because everybody’s skin was tattooed. It was exactly what I planned to do the minute I was old enough, because I wanted to. Because I could.

So I drove in my green mini-van to the tattoo studio all my friends went to and spent the morning of my 18th birthday getting tattooed (with a tattoo of such poor quality and miniscule size that I would eventually cover it up entirely). Back then, more than 15 years ago, my tattoos were a declaration of selfhood, a way to decorate my body with things I loved. Back then, the niggling pain in my back was just a minor irritation, probably nothing big, just a discomfort from standing on my feet as I worked as a restaurant hostess. There was no connection between that pain and getting work done at a tattoo studio.

Except the back pain didn’t go away. It got worse. Some days, the pain was so bad that I would have to call in to the restaurant where I worked, gasping as I explained I wouldn’t be coming in that day. I graduated high school and moved away from my hometown to attend the University of Central Florida in Orlando. Days when I couldn’t work were inevitably also days when I couldn’t attend class.

I’d spend hours in bed, splayed out, trying desperately and carefully to not move at all. If I stayed still, I couldn’t feel the lightning bolts of pain shooting from my back into my ribcage, down my legs and into the soles of my feet.

Back then, the niggling pain in my back was just a minor irritation, probably nothing big, just a discomfort from standing on my feet as I worked as a restaurant hostess.
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At some point, the pain in my back relocated. It moved into my ribs, and my hips, and my ankles, and my legs. In desperation, I tried everything: visits to urgent care were followed by the chiropractor, then the acupuncturist. When they had no solutions for me, I added regular doses of ibuprofen to my repertoire. As the pain increased, so did the number of days I spend in bed. The pain was debilitating.

I moved from one specialist to the next. I felt increasingly disconnected from my body. I had never felt isolated from myself before. My body had always been me. After all, isn’t that the way most humans exist? Our bodies are ourselves. There is no separation from body and mind.

Except a natural separation begins to exist when your body stops behaving predictably. The body that I had relied upon for so many years, through karate lessons and long-distance running and college all-nighters, suddenly stopped behaving in a way I could anticipate. I could no longer trust that I would wake up and be able to complete all the tasks I needed to through the course of the day.

Hell, I could no longer trust that I would even be able to crawl out of bed. A creeping dysphoria set in: this is my body, but it is not myself. My body was separate from my existing, and both had to be managed in order to get through the day. As my dysphoria became more apparent, the act of being tattooed started to be less a declaration of selfhood and more about feeling a sense of control over a meatcage spun wildly out of control.

The idea of disability and dysphoria are no strangers to many other disabled humans. Jill Jones, a 34-year-old disabled woman from the San Francisco Bay Area, understands the idea of needing ownership over a body you no longer feel like you control — even though she lives with a disease that prevents her from being tattooed anymore. Her disease, hereditary angioedema type 3, is an incredibly rare, life threatening condition that causes episodes of edema (massive swelling) in various body parts, including the hands, feet, face, intestines, and airway. Without treatment, death occurs in approximately 25% of HAE patients.

“I feel like once I disclose my current diagnosis, artists don’t want to tattoo me,” she explains. “Minor physical trauma can trigger life threatening airway attacks at worst, and at the least localized swelling, bodywide pain and the need for a rescue shot that costs over $11,000.” Despite this, when she can be tattooed, it is a source of relaxation and euphoria for her; she’s even slept through long sessions before.

“Ownership is huge when you have no control over your bodily functions and you don’t know when your body will turn on you, killing you. You develop a fear, and a resentment of your body. It represents your illness and all the pain and loss that follows suit. So when I look at my tattoos it helps me to see me there, separate from the genetics that want me dead.”

After I was finally diagnosed with hypermobile Ehlers-Danlos Syndrome (hEDS), a genetic, degenerative collagen disorder that causes my joints to easily dislocate, I began to reconcile the reality that my symptoms weren’t going to disappear. There is no cure for hEDS. As my understanding of my body evolved, the nature of my tattoos did, too. They started getting bigger, stretching across my entire shoulder and down my arm, or over my hip and across my thigh.

The pain of the actual session started to recede, too. I wasn’t so focused on the painful bite of the needle anymore, or wondering when the session would end. I started to look forward to the distraction of the hurt. It was a hurt I could opt-into, one I could select.

Jaz Joyner, a 27-year-old Black self-defined “womanperson who is a bit genderqueer,” mentioned that same concept of control when discussing her tattoos. After an emergency salpingo-oophorectomy to remove her fallopian tube and ovary, she was diagnosed with polycystic ovary syndrome (PCOS), hypertension, and hyperthyroidism at age 13. An osteoarthritis diagnosis followed at age 18 (with three herniated discs in her back), and a diagnosis of fibromyalgia and tactile allodynia (painful sensation caused by innocuous light touch.) Joyner says that it was the pain from the tactile allodynia that got her into tattoos and body modification.

“I am often in pain or can’t control what my body feels from one day to the next, and that usually makes me feel powerless,” Joyner said. “Tattoos and piercings give me back that control. I pick where and when the pain will happen, and this pain comes with a reward: beautiful art I can keep forever.” In fact, Joyner’s first tattoo was representative of her experience with the medical side of her illness.

As my dysphoria became more apparent, the act of being tattooed started to be less a declaration of selfhood and more about feeling a sense of control over a meatcage spun wildly out of control.
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At some point, I stopped mulling over an idea for months or years before finally committing to it. I started looking at the sessions themselves as a respite from the normal pain of existing within my own body. Being tattooed was still painful, but as Joyner said: at least it was pain I could choose.

Selecting the pain meant it was not only bearable, but almost pleasurable. And, unlike the chronic pain from my rebellious meatcage, this hurt left me with a visible trophy to celebrate. Something about being able to run my fingers over the colorful artwork now permanently emblazoned across my skin felt like I’d come away a winner.

I knew that my reaction was, in part, a response to the associations I’d made with the act of being tattooed and the studios themselves. The positive connection in my brain left me dripping with positive endorphins and adrenaline. In fact, the idea of place attachment is the emotional bond between person and place, and a main concept in environmental psychology. The tattoo studio became an environment of safety for me, a place where I had the power to not only control my pain but shape it into something that felt valuable.

Andrea Lausell, a 25-year-old Latinx woman from Los Angeles, understood the interactions of brain chemistry intimately. “After a tattoo, I feel euphoric,” she said. “I feel in control of my body, and as a result of the pain, [I have] something I love on my body…” Lausell was born with Spina Bifida Lipomyelomeningocele, a birth defect where the spine fails to properly form.

She was diagnosed with Chiari Malformation, a condition where brain tissue extends into the spinal canal, in 2011. Over the course of her lifetime, she’s undergone 12 back operations and a skull decompression to remove a portion of her skull. “After a [medical] procedure, I generally feel drained and traumatized,” she clarified, in opposition to the elation of being tattooed.

In fact, this emotional connection to the experience is likely connected to the neurotransmitters the body releases during the tattoo process. Adrenaline, a hormone and neurotransmitter that plays an integral part to the flight-or-fight response, is one of those transmitters. Interestingly, adrenaline may also serve as a memory enhancer during these experiences, deepening our positive connection and place attachment to the experience.

Other neurotransmitters are also released during the tattooing process, including endorphins, which interact with our brain’s opiate receptors. Endorphins act similarly to morphine to reduce pain, and are released when we are injured. Since the act of being tattooed is hours upon hours of physical injury, needles digging into our skin and leaving ink behind, it’s unsurprising that the body dumps adrenaline and endorphins, affecting the experience.

Gabriel Vidrine, a 38-year-old transmasculine genderqueer human from Chicago, got their first tattoo when they were 18 — long before any of their chronic illness diagnoses. Vidrine lives with asthma, depression and anxiety, chronic migraines, and a subarachnoid cyst (a fluid-filled sac in the tissues surrounding the brain and spinal cord.) They came out as transgender at 35, and have connected their body dysphoria as the main trigger for their anxiety and depression.

“It’s a type of high. The pain itself is a distraction from everything else,” they said.“As a self-harmer, whenever I’d hurt myself, there would be this rush of endorphins, and I’d feel free and light for a day or two (perhaps what most people might consider ‘[feeling] normal). It’s the same with a piercing or a tattoo.”

While everyone who gets tattooed experiences the rush of endorphins and adrenaline, people with chronic illnesses may experience those factors differently. Pain perception can also be influenced in the brain itself: the brain can amplify, decrease, or outright ignore the pain. Additionally, cognitive and emotional factors also determine what happens to the pain signal. If we’re looking for something specific to focus on that isn’t our chronic pain, tattoos serve as an excellent distraction.

While our understanding of pain perception and how various factors influence remains poorly understood even today, the gate control theory of 1956 revolutionized pain research and remains the basis for much of our current understanding. In short, the theory posits that pain messages travel from the site of injury through nerve “gates” in the spinal cord before finally ending up at the brain.

The theory proposes that the activation of nerves which do not transmit pain signals can interfere with signals from pain fibers, thereby inhibiting pain. An easy example? You smack your funny bone on a desk. Then you rub your elbow, trying to stop the pain. The nerve signal produced by rubbing overrides the sharp pain and results in a decreased experience of the sharp funny bone pain.

If we’re looking for something specific to focus on that isn’t our chronic pain, tattoos serve as an excellent distraction.
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Though there isn’t any clinical research out there following up on the idea, it stands to reason that the vibration from the tattoo machine works in the same way that rubbing the smacked elbow does. For a period of time — especially in conjunction with adrenaline, endorphins, and positive place attachment — the body might tune in to the non-pain signals from being tattooed by a heavy machine that’s vibrating, drowning out the constant drone of chronic pain.

Science or not, the reality remains that a whole host of chronically ill humans view body modification as a way to control bodies gone terribly awry. To us, tattoos feel like freedom, like armor, like hope, and release. They’re a way to change a body out of our control, and a way to be gentle with ourselves during times when we’d rather be doing the exact opposite.

Jamie Rose, a 22-year-old nonbinary transgender human from Cardiff, Wales, described it succinctly. “While the tattoo is healing, I definitely have a lot more compassion for my body than I usually do; I think healing an acute wound is a lot easier than living with the day-to-day grind of a chronic illness.” Long after we’ve walked out of the shop, after the endorphins have faded, we’re left with artwork that we need to care for in order to ensure that it remains as beautiful after the fact as it did in the moment.  

“I see my body… as a canvas for something an artist has put hours of work into, that I need to respect and care for,” Rose clarified. “It also makes me feel more cool and confident and in charge of my own physicality, which is something that being disabled can often strip from me.”

Every time we finish a session, I practically skip down the stairs from the studio, carefully cradling my arm, barely feeling the normal hurts from descending a set of steps. I can hardly wait to get home and admire my newest work of art.

My chronic illness made it impossible for me to have both a menstrual cycle and a life.

“Maybe I should stop my periods.”

It wasn’t something I had ever before considered and I had, in fact, wondered if there could be potential, unknown, long-term ramifications when friends of mine stopped theirs. I had never considered my periods an inconvenience or gross or annoying; in fact, I had liked the rhythm of them. The times I had been on birth control I resented how it made me feel divorced from my body.

When I asked this question, I was sitting in my doctor’s office, nine months into antiviral treatment for chronic fatigue syndrome, 11 years after starting treatment for Lyme disease. The previous year had been hard. Though I had been significantly healthier than I’d been in a long time and had started running again, working hours that were closer to full-time and going out with friends, every month, in the week before my period, I collapsed.

In these weeks, I felt ragged, frayed; the simple act of my body functioning with regulatory actions felt like too much of a drain. My life required too much of me in these weeks and I’d stumble through work, cancel plans, and do as little as possible. I’d get cold and not be able to warm up again, no matter how many burning hot showers I took; fevers would flash through me, but I never retained the heat and I’d collapse in a heap of fatigue, wracked with fevers and chills, muscle pain, sore throats, and mental confusion again. When my cycle was over, I’d be better than I was during the flare-up but worse off than I had been before my period. Every month, I’d take another step down in my health.

I always wonder how to describe a fatigue so profound it feels like a weighted shroud, especially as so many doctors have not believed me. This is not just being tired, it’s a fatigue of dangerous proportions that feels like an emergency in my body, threatening to take me down again. When I was finally diagnosed with chronic Lyme disease, I’d been sick for over 11 years — 11 years of doctors who refused to believe that I wasn’t just seeking attention, 11 years of worsening chronic fatigue and tick-borne illness. These are diseases that, when not addressed, become steadily more serious and more difficult to treat.

The Hidden Battle For The Rights Of Chronic Fatigue Syndrome Sufferers

When I was 24, I moved back in with my parents, deep into third-stage Lyme. My hairline had receded dramatically, deep purple rings dragged on my always bloodshot eyes, my skin had gone gray and papery. My body was wracked with so much pain it felt like simple daily use of my joints was causing them to degenerate. I wondered if I would be able to walk in three years. I couldn’t follow conversations, words had lost significance for me, I could no longer read. My inability to engage with the world mimicked that of my grandfather’s Alzheimer’s Disease. I was so tired that I hadn’t laughed in years.

A decade-plus of treatments has stripped me of most of the worst effects of CFS and Lyme (the symptoms often overlap) and returned me to living a life more fully than I had ever been able to before. But I still declined each month with my period, and never quite got back to where I had been before the decline. I was doing better than I had been before I started my antivirals, I told my doctor, but I felt that I would never be doing well — unless I stopped menstruating.

My doctor, Jennifer Sugden, N.D., had treated me for Lyme and CFS with a variety of different protocols, including hormone replacement therapies. But I’d never suppressed my periods before. I had always collapsed the week before my period, but I thought that this was one more thing that would resolve as I got better. Instead, it seemed that the hormone changes around menstruation would always be an Achilles heel.

This is a common experience among patients with Lyme and chronic fatigue syndrome and some other tick-borne illnesses. Dr. Sugden says that when she discusses Lyme and CFS within the medical community of Lyme-literate doctors, they talk about how “women are typically harder to treat and some women really decline before or with her period.” Jose G. Montoya, director of the multidisciplinary division of Stanford’s Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Initiative, concurs, saying that “this phenomena is really pronounced in some women. You don’t have to dig this [information] out…that is so clear in some cases, that the disease is significantly worse right around their menstrual cycle.” He acknowledges that “we will have to be treating women and men differently, there is no question.” (It’s important to note here that menstruation is not just a “women’s issue,” and can affect trans and nonbinary bodies as well.)

So far, the research on ME/CFS has been meager at best and without a focus on female endocrinology. Stanford’s ME/CFS Initiative is currently recruiting subjects for a neuroendocrine study with women of child-bearing ages to hopefully give some answers on this subject. Eventually, Dr. Sugden says, “it wouldn’t surprise me if stopping periods becomes a part of protocol.”

So what is it about periods that can compromise some patients with ME/CFS and tick-borne illnesses so dramatically? Dr. Sugden points to an underlying problem: overworked adrenal glands. The adrenals produce cortisol, which regulates our circadian rhythm, and DHEA, which is the building block to produce estrogen and progesterone. “It’s having to produce DHEA on a cyclic pattern when the adrenals are not strong enough to produce it on a monthly cycle,” Dr. Sugden says about the monthly decline some people experience. “But when you replace the hormones and suppress periods, the glands can focus on healing themselves. You allow the adrenals to NOT produce DHEA and your body can produce cortisol at the rate it needs to.”

My doctor said it wouldn’t surprise her if stopping periods becomes a part of chronic fatigue syndrome protocol.

After three months of supressing my periods, I realized that I hadn’t had any extreme crashes in my health. While I wasn’t fully well, my health was steadier and I was incrementally getting better. Six months later, I was stable enough to start chasing dreams again. I packed up and moved to Mexico City, a place I’d been talking about moving to for years. I never did because I needed my family and my doctors close and I didn’t want to move abroad when I would have to live my life tight, watching to never do too much.

It’s been a year now and I live more easily than I ever thought possible. I’ve settled into my new home and language, work full time, and still have energy left over for friends, exploring, and climbing trips. In many ways, stopping my periods helped give me back my life.

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