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Out and Proud at 71: A Retrospective on Queerness and Disability

Illustration of a brown-skinned person's legs and feet. They're wearing white shorts and white sneakers with rainbow patterned socks. They have a white cane.
Posted on by Kathi Wolfe

CONTENT NOTE: ableism

Today, at 71, I’m an out and proud queer, disabled, cisgender woman. I’m also a writer and poet.

I’m open about being legally blind. Tapping my white cane, reading my poetry from text blown up large on my iPad, my low vision is out there for everyone to see. Being low vision is as natural to me as breathing.

Like many of us who came up in a culture steeped in anti-queerness and ableism, I still find myself, from time to time, drowning in moments of shame. I recently found myself apologizing when I saw my eye doctor. “I’m sorry for asking you to dim the lights so I can see the eye chart,” I told the technician.

“You don’t need to apologize,” she said.

Yet, despite these momentary blips of shame, I’m as proud of being a part of the disabled community and disability history as I am of being a part of the queer community and queer history.

But developing pride is far from easy. It takes work. “You get proud by practicing,” the late disabled, queer poet Laura Hershey wrote in her poem of the same name.

I was born disabled. But I didn’t begin to come out and become proud until nearly 50 years ago, in the summer of 1974.

I first learned I was disabled when I was five years old. As long as I said I had some vision (nevermind that it was extremely limited), I could show my face in society. I wouldn’t embarrass my family, scare the neighbors, or frighten strangers.

Being blind was shameful, pathetic—only for beggars hanging out with their tin cups. Except, of course, for the blind musical genius of Ray Charles or Stevie Wonder, who could really sing! Or DeafBlind saint Helen Keller, who’d been “saved” by Annie Sullivan, the miracle worker. (No one ever mentioned that Annie was low vision like me.)

Being a creature of my era I, too, had ableist attitudes towards disability and disabled people for much of my youth. From the time I was a kindergartner—trying to understand why I shouldn’t allow anyone to call me blind—to my early 20s, I was uncomfortable with my own disability and around others with disabilities.

Because I didn’t want to be identified as blind, I didn’t use a cane then, even though I often bumped into walls and sometimes fell down steps. Why did I not get training on how to travel safely—and with self-confidence—with a cane?

But in my junior and senior years of college, I slowly began to feel more comfortable in my skin.

The burgeoning women’s movement (what we now call second wave feminism) began to resonate with me. As a student at a women’s college, I learned that women didn’t have to marry or wear makeup or heels. That we would likely encounter sexism. But we could aim for careers in everything from the arts to medicine and law.

Today I can see what a white, binary version of feminism this was. But it offered liberating possibilities to me and others of my generation, who grew up in a culture of rigid gender and sexual roles. Where a single woman couldn’t get a credit card. A woman who didn’t marry and have kids was considered abnormal (unless she was disabled, of course). And a man would be called “queer” (as a slur) if he cried or liked to cook.

Just a few years after the Stonewall Uprising, I also started to realize (and even enjoy) that I was queer. I’d had feelings that I liked girls since I was 13, but I’d repressed these feelings because “nice” girls weren’t supposed to “like” girls.

But, as I began to hang out with other queer college students, some of whom had marched in Pride parades, I finally began to embrace my sexuality. It would be a while before I had my first same-sex relationship. But I remember watching “The Wizard of Oz” in the late 70s as I held hands with a woman, shortly after I’d come out to myself as queer. I’d never been more happy to see a rainbow!

At this juncture in life, some of my friends and teachers began to nudge me toward at least acknowledging my disability as well, if not outright identifying as disabled. And then I was told about the Perkins School for the Blind in Watertown, a Boston suburb.

I didn’t know what I wanted to do after graduation. But I was ready to live in a city, and I knew I’d need to learn how to safely navigate an urban area. I enrolled in a summer program at Perkins which taught Blind and Low Vision people how to get around safely.

I hadn’t met more than two blind people in my life or crossed a city street alone. I’m not sure which was more terrifying to me: learning to listen to traffic and create an “arc of travel” with my cane or being among a throng of about 50 Blind and Low Vision students and staff.

But I had no idea that this summer would be life-changing.

I began to talk with other Blind and Low Vision people. I discovered that they weren’t “creatures from the Black Lagoon.” Hailing from all over the United States and the world, they were smart, funny and kind. One was a singer who’d performed on talk shows. Another was a baseball fan. Some were cranky. They’d joke about being blind.

We told our stories to each other. I’d often felt that I’d been alone, that I’d been the only one to have been bullied, ridiculed because of my disability. But it turned out that I was far from unique. We’d all been teased, verbally put down, not picked for teams or class offices. Some of us had been beaten up on the playground in elementary school or in the halls of high school.

Gradually, I became aware that there was discrimination against disabled people.

I’d always felt that non-disabled folk didn’t like to be around people like me. But I finally realized that this wasn’t just a “feeling.” Disability-based prejudice was a real thing.

The culmination of my Low Vision coming out process was discovering that people with disabilities have rights. That, though discrimination complaints are quite difficult to win, we can seek legal redress if we encounter disability-based discrimination.

After years of protest, including a historic 1977 sit-in, Section 504 of the 1973 Rehabilitation Act was finally signed in April 1977. Section 504, the precursor to the Americans with Disabilities Act, prohibits hospitals, libraries, schools, courts, and other institutions that receive federal funding from discriminating against disabled people.

Looking back over the half century since that groundbreaking law, how different my life has been from what I expected!

I met, fell in love with and, until her death from cancer, had a long, loving relationship with Anne—the love of my life. Since the early 1990s, I’ve found fulfilling work as a freelance journalist. I’ve written about everything from the role of disabled people in World War II to the hidden history of Helen Keller and an ongoing series for the Washington Blade on people who identify as queer and disabled. I’ve had an essay published in The New York Times, the paper of record. My poem, “Tasting Braille,” has been the Poetry Foundation’s Poem of the Day. I’ve had a wonderful life.

Kathi Wolfe (she/her) is a writer and poet. Wolfe’s commentary and essays have appeared in The New York Times, The Washington Post, The Progressive Media Project, and others. She has been a Rosalynn Carter Mental Health Journalism Fellow, and was awarded a mini-fellowship from the Kaiser Family Foundation and the National Press Foundation to report on assisted suicide and people with disabilities. Wolfe is a longtime contributor to the Washington Blade, the acclaimed LGBTQ+ paper.

My Pain is Personal

A young, brown-skinned Black woman seated on a bed holds her abdomen in pain.
Posted on by Maya Williams

Note from Editor-In-Chief Denarii Grace and Director Allexa Laycock:

We invite you to read our offering of an introduction to contextualize Maya’s personal narrative with the many methods of engaging with disability rights and disability justice. Our team, our storytellers, and our audience are all in different places with our disabled identities and self advocacy. While we ask that all blog writers self-identify as disabled to write for us, we know that identifying as disabled is not an option for all, particularly Black disabled people.

From author and activist Sami Schalk’s Black Disability Politics, “…the racism of white disabled people and white-dominated disability rights organizations as well as the racism and classism of medical, psychiatric, and legal systems in the United States have made identifying with disability difficult to impossible for many Black people.” The process of identifying as disabled often is a holistic one, taking into account personal history, community messaging, engagement with inaccessible medical systems, and an evolution in self-awareness. 

Also in Black Disability Politics, Schalk asserts that “This quality of being holistic also applies to the tactics of Black disability politics. Black disability politics focus simultaneously on micro (individual and community) and macro (societal, national, and international) change.” Maya’s piece is an example of the micro focus of disability politics. Maya’s personal journey through religion, sex, health, and self-care gives an intimate portrait of a holistic evolution of disability identity.

CONTENT NOTE: suicide ideation, religious trauma

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I grew up with the religious messaging that sex was a means to produce children; the only pleasure allowed within sex is within state-sanctioned marriage. Anything that resulted in orgasm before marriage was sinful. So as a form of self-preservation, I wore the purity ring my dad gave me, viewed masturbation as an addiction, and kept my intimacy with romantic partners as conservative as possible. That level of self-preservation was so anxiety- and stress-inducing that my body was closed off. 

I had been feeling pain noticeable to me since early August 2023. My first noticeable symptom was a sharpness on my right side that I’d never felt before. It wasn’t until late August that I received an endometriosis diagnosis. 

I experience cramps caused by large cysts on my uterus. They’ve apparently been alternating from my right side to my left side in the months since I was diagnosed. Along with that, I experience bladder changes that cause me to pee more than usual. It’s debatable, though, whether or not this physical agony is what has been wreaking the most havoc…or the emotional agony.

Unfortunately, early in my chronic pain journey, my condition activated suicidal ideation. I have felt suicidal ideation before, but not in a way inherently connected to my body. I didn’t expect that and, most importantly, I didn’t want it.  

Kaveh Akbar wrote in his novel Martyr! about how what if everything one was supposed to do to heal just “lead back to the same shame?” I had been working on my mental health for years, including my suicidal ideation. I’m always learning and relearning that healing is a non-linear process, but it was helpful when it was the same process I was dealing with over and over again. Now there was this physical condition that shifted my healing process, that was so new and undesired. Shame was only compounded from there.

Having that feeling again, in this context, made me sad. I know how frustrating and problematic the narrative is that abled-bodied people make about disability and suicide. “Oof, if I were in your shoes, I’d kill myself.” It’s gross. 

I’m not in a period of my life anymore where I have the desire to actively end my life. At the same time, I know I wanted to write about this because it affected me. I’m the one who is in pain and this is how I’ve been dealing with it. But it’s also been difficult to write about. (At the time of writing this, I missed two deadlines for when this piece was due because it was hard to write about.)

Pre-diagnosis, I’ve always said the phrase “being alive is hard.” Post-diagnosis, particularly when I’m in a significant amount of pain for more than a week, I would say “being alive is a scam.” It was one thing to recognize the universal condition of life being hard due to the systems and trauma that cause demise of our mental health. It was another thing to have a physical ailment completely out of my control and prevention to dictate my liveliness. 

Endometriosis created a negative self-talk about my sexuality. “You wouldn’t be like this if you hadn’t tried to engage in penetrative sex with your partner.” “You wouldn’t be like this if your pelvic floor wasn’t so fucked up.” “You wouldn’t be like this if you didn’t have all of these contradictory desires in your body in the first place.” 

Early in my diagnosis, sex with my partner of five years was difficult when still in physical agony. I felt like my partner was afraid to touch me when, in reality, I kept internalizing that I didn’t deserve to be touched. Illogical thoughts soon emerged, like “I’m in pain because of my sinning; sinners don’t deserve to be touched.” 

I have experienced illogical or intrusive thoughts during intimate moments with my partner—and in sensual though not sexual intimate moments with people before I met my partner—but not in a way that was inherently connected to bodily hurt. They were thoughts about my self-worth, how much I was willing or unwilling to “put out” while living in a body assigned female at birth.

It also doesn’t help that able-bodied people perpetuated the narrative of disability equating wrongness in our predominantly Christian society. I experienced this messaging when going to church and the pastor would say one’s disability was a sign of “brokenness” or “missing the mark” (which was often used as the literal definition of the word “sin.”) I was only able to start combating these thoughts by going to therapy, expanding my knowledge in consent education, and writing more and more about how I want to articulate sex.

Although I’m no longer waiting until marriage like I was raised to believe, I believe in maintaining open and honest communication in all contexts. I am improving my communication with my partner, and I’m grateful to my therapist for helping me unpack so much so that I can say kinder words to myself, even while dealing with my chronic discomfort. It’s still an ongoing journey to unpack it all. 

In addition, I’ve been taking a daily progesterone pill, buspirone, clonidine, and duloxetine, which helps my mood and the cysts. Sleeping with extra pillows, letting myself cry and rest more has also helped.  
Finally, hearing from people in my life or their loved ones dealing with endometriosis has been the most helpful. Hearing how they needed to be kind to themselves while pacing during their day, despite messaging around whether or not their pain is real. It has helped remind me that my pain is real, and I am entitled to care for myself however I need to in that pain.

Maya Williams (ey/they/she) is a religious Black multiracial nonbinary suicide survivor who served as Portland’s poet laureate from 2021-2024. Ey is published in venues such as Black Girl Nerds, The Daily Beast, Stylist, Rooted in Rights, and more. You can find Maya’s two poetry collections and published essays at eir website.

Lewis Capaldi is Taking a Break. Why Can’t I?

Singer-songwriter-musician Lewis Capaldi, a white man in his 20s, wears a black jacket and pants and a white T-shirt as he stands in front of a microphone with an acoustic guitar wrapped around his neck, hanging across his chest. His eyes are closed and his lips are slightly parted as he sings into the mic.
Posted on by Gretchen Gales

On June 27th, 2023 Lewis Capaldi officially announced his hiatus from touring, citing “the impact of Tourette Syndrome” as part of his decision, one discussed in his award-winning documentary How I’m Feeling Now. He did not take this decision lightly, empathizing with fans about how disappointing it is to look forward to a tour that’s been postponed—and the costs associated with it.

There’s no doubt that Capaldi loves touring, his fans, and the ability to play music in front of thousands each night. As a fellow Touretter, I’m thrilled that there is both representation of Tourette’s and the need for rest from such an international star. But I most resonate with the final part of his Instagram statement, which apologizes for rest while simultaneously justifying it: “I’m so incredibly sorry to everyone who had planned to come to a show before the end of the year but I need to feel well to perform at the standard you all deserve.”

While I’ve hardly achieved the same elevated status as fellow Touretters like Capaldi, Billie Eilish, Howie Mandel, Steve Wallace, and others, I’ve achieved a lot in my life. I’ve been Key Club President, a foster for kittens, a published writer, musician, and so much more. This confuses people when I do desire rest.

There are days when I can indulge in spontaneous plans. On other days, I need to reschedule advanced ones. It’s all up to my body, which cannot be tamed on a whim. During times of stress it can flare up, waxing and waning as it pleases.

But you were fine yesterday; you’ve pushed through it before, I think, an echo of others’ sentiments when I cancel or postpone plans. It also shapes others’ decisions about whether or not to include me at all. Their explanation is usually, “I didn’t think you’d want to come” or “It would be too stressful for you.”

This leads to shame, guilt, and feeling excluded, just for being in an unruly body; requests to forgo my comfort and embrace pain for the sake of others’ needs are seen as the “right” thing to do. While there are many times wherein I believe in pushing through (if possible), like an important celebration or funeral, it can be stressful on the body if the brain decides it’s a “tic-ier” day. It often results in having to take muscle relaxers, sedatives, and pain relievers to get back to a manageable spot.

Yet I still feel the need to apologize.

Many with Tourette Syndrome are encouraged to push past these difficulties, which is why you don’t often see people disclose their Tourette’s. As a child, my neurologist focused on controlling and eliminating the tics he believed were temporary…and my fault. He blamed chocolate, video games, SpongeBob, anything but a disability. So the masking began—and worked—and continued throughout my childhood and teen years. I was an honor roll student, involved in many service clubs and honor societies. I hung out with friends, pushing through the discomfort for the most part and making up an elaborate excuse when I couldn’t.

I believed my tics were a personal failure…until my late diagnosis at 22, long after my tics “should” have left. I had to confront the fact that rest was not a privilege, yet the guilt of canceling or modifying plans remained.

Like many others in the world, doomscrolling TikTok is a favorite pastime. User Vermin and the Rats (with a green pixie cut I wish I could pull off) confronts me with truths: “Is it possible you tie your sense of self-worth to your productivity and your ability to help others, and that’s why you feel so guilty when you’re not able to be productive and you have to rest? That you’ve been masking your disabilities for so long, that you genuinely don’t know how to gauge what your needs are?”

It’s Just Nerves: Notes on a Disability by Kelly Davio is an essay collection chronicling the author’s experience as a disabled person in the 21st century. She writes, “If you are going to disclose your illness, our culture tells us, you had better do it in a way as to make other people feel gratitude for their own good health, to take advantage of their robust bodies….” My addition? If you disclose your illness, you better be a superhuman of sorts. A gold-winning athlete. A wildly successful musical artist. Even then, you’ll still need to apologize for the need to rest. After all, your exceptionalism is waning, which is unacceptable.

In many programs across the United States, services for disabled students are referred to as ”Exceptional Education.” If you happen to be “gifted” AND disabled, you’re labeled as “Twice Exceptional.” Disability, as mainstream culture understands it, cannot inherently be associated with anything good at all; it must be paired with something to “make” it okay. In this case, being exceptional is the only acceptable way to exist in a disabled body. Don’t believe me? Just look at inspiration porn, or the objectification of disabled people to make able-bodied people feel better about their own lives.

When people respond to me with “That’s okay” or “You’re still such a capable woman” after explaining how my Tourette’s works, I get frustrated. Of course it’s okay. I never said anything about my capabilities. I never apologized for my existence.

It’s hard to correct them outright. I’ve even had to correct myself when I’ve thought or said something similar to people with other disabilities. It’s hardwired into so many brains that disability cannot coincide with anything neutral or good, even if you’ve lived it. The only way out of it is to rest boldly. After all, one of the primary tenets of disability justice is rest. No maybes, buts, ifs, or sorries. Just rest.

To practice, I’ve been typing out and removing apologies from my requests to postpone or skip events. I often still leave them out of fear or guilt, but I’m slowly improving my self-advocacy, simply taking the rest I’m allowed to take. I can no longer feel the need to “make up” for the way I exist “proving” exceptionality.

Gretchen Gales (she/her) writes…a lot. After realizing becoming a veterinarian meant being good at math, she pursued writing and teaching as a career instead. You can find more of her written and artsy stuff at www.writinggales.com.

A Stake in the Fight: An Activist’s Take on Eco-Ableism

Black background. A clear drinking glass filled with multicolored plastic straws.
Posted on by Leah Stagnone

I’ve been involved in advocacy on disability and chronic illness-related issues for several years now; my work has taught me important transferable skills. Because I have a deep love for nature and our planet— and since disabled people are disproportionately impacted by climate change —I sometimes ask myself why I’m not using those skills to organize at the intersection of disability and environmental justice.

The unfortunate truth is, everytime I begin to dip my toes into an environmental advocacy space, I’m reminded rather quickly of the reason I haven’t spent much time there. As a disabled person whose access needs don’t always align with the idealized “perfect” eco-friendly lifestyle, I’ve had a few too many interactions with individuals in the environmental activist community that left me feeling misunderstood and unwelcome. I know that I am not alone in this experience. 

I believe that living in alignment with our values is important, and for me, that includes being mindful of how my actions impact the earth. I practice eco-friendly habits as much as possible: I thrift almost all of my clothing, I compost, and I’ve made nearly every sustainable swap that one could think of. But as someone living with complex, disabling chronic illness, certain lifestyle changes are not possible for me. 

My particular disabilities mean that I cannot simply forego air conditioning in the summer, go vegan, or bike to work. I rely on my car more than I would like to because walking too far can trigger chronic pain. In addition, my weekly immunoglobulin infusions produce an unfortunate amount of plastic waste that is outside of my control.

Some people with disabilities face different barriers than I do to sustainable practices, depending on their needs. I have disabled friends who require plastic straws to drink, and others who rely on pre-packaged foods and single-use items because chronic illness limits their ability to cook. Unfortunately, these kinds of needs and limitations, when asserted in environmentalist spaces, often seem to be met with skepticism, disapproval, or even condemnation. 

A few years ago, in a conversation with a local climate organizer, I tried to explain why following a vegan diet is not possible or healthy for everyone. Like many others in the chronic illness community, I’ve endured extended stretches of time during which I could only tolerate a few “safe” foods without scary mast cell activation syndrome reactions. Over the years, I’ve learned that my most consistently safe foods are not plant-based and that I need to give my body whatever nourishment it accepts.

As I explained this to the activist, she asked invasive questions about my medical conditions, expressed disbelief that any chronic illness could make a fully plant-based diet inadvisable, and implied that I was further harming my health by not being vegan. Essentially, someone who barely knew anything about me told me that I was wrong about my own disabled body. I have watched a similar pattern of behavior unfold repeatedly on social media, whenever a disabled person states that a particular eco-friendly change isn’t accessible for them. 

I didn’t know until recently that there was a term for this particular brand of disability discrimination that shows up in environmental activism, called “eco-ableism.” Eco-ableism is the result of nondisabled people failing to consider that their proposed solutions to environmental issues can make life inaccessible for disabled people, all while neglecting to recognize the fact that disabled people are some of the most vulnerable to the effects of the climate crisis. In my experience, eco-ableism often also involves a failure by nondisabled people to believe or empathize with disabled people when we speak up about our access needs or the ableism that we’ve encountered. 

There are steps that environmental activists can take to prevent eco-ableism and make their spaces more welcoming to disabled people. One of the changes I most hope to see is a shift away from the scrutiny that disabled people are often met with when we assert our needs. Everyone can be a better ally in general to disabled people by trusting that we know our own bodies and access needs better than anyone else can. 

Unfortunately, nondisabled skepticism about our access needs is nothing new for the disability community. Many of us know what it’s like to fear that we’ll be harassed for using accessible parking, accused of “faking” if someone sees our legs move in a wheelchair, or judged as “lazy” if we are unable to work.

Activists striving to be anti-ableist in their organizing can avoid perpetuating this exhausting scrutiny by accepting a disabled person’s stated access needs without disbelief, invasive questions, or unsolicited feedback. If a disabled person shares that there is a particular way they need to eat, drink, get around, or take care of their body, the first instinct of fellow advocates should be to believe them. 

I’ve also noticed that eco-ableism typically manifests when activists are spending energy analyzing each others’ individual actions, often at a detriment to work on larger systemic issues. To be clear, our individual choices matter; we should all do what is within our abilities to live in alignment with our values. However, irresponsible corporations and government inaction are largely to blame for the climate crisis— not disabled people who need straws to drink.

I hope that, instead of questioning individuals about whether their disability actually prevents them from making a specific sustainable swap, advocates will redirect that energy toward systems change that creates a more just world for all of us. Since climate change has a disproportionate impact on people with disabilities at a systems level, an inflexible focus on individual actions that frames us as the problem ironically only serves to further alienate a marginalized group from advocacy on an issue that we are experiencing most acutely. 

Finally, to avoid eco-ableism and ensure that proposed environmental policy changes don’t inadvertently leave any marginalized group of citizens behind, it’s also essential that disabled people play a significant leadership role in shaping environmental movements and policy.

When diverse  perspectives are valued and integrated into a movement, the solutions we fight for are solutions that lift up all of us, as opposed to unintentionally  creating more obstacles for some. To achieve true equity, not only do we need to make sure that disabled people have seats at the table, but also that our viewpoints are regarded as important and meaningfully incorporated into decision making. 

Despite the barriers some disabled people might face to a sustainable lifestyle, disability justice and environmental justice are not in conflict. Rather, they are deeply interconnected, and the disability community has a serious stake in the fight for the future of our planet. Disabled activists also have valuable skills and perspective to bring to environmental advocacy; I’m confident that our involvement will only make the movement stronger. While eco-ableism is discouraging, I’m optimistic about the kind of world we can build when we work together to ensure that all perspectives, abilities, and needs are taken into account.

Leah Stagnone (she/her) is a disabled community organizer and nonprofit professional based in New England. She is a Co-Founder of  #MEAction’s New Hampshire State Chapter, where she fights for equity for people with infection-associated chronic illnesses like ME/CFS and Long COVID. When Leah isn’t engaged in advocacy work, you can find her gardening, reading, spending time in nature, or partaking in one of her many crafty hobbies.

Chronic Inflammatory Response Syndrome: An Unnecessarily Arduous Journey to A Rare Diagnosis

A patient, a blonde white woman wearing a dark top with a white top underneath, holds her head in pain while a fair-skinned doctor, face unseen, holds a clipboard while wearing a white lab coat with a stethoscope around their neck.
Posted on by Mia Tompson

As I sat in the waiting room of my doctor’s office, a wave of hopelessness washed over me. It was my fourth visit that month; I was beginning to feel desperate and invisible. I’d been experiencing strange symptoms for months—fainting spells, headaches, vertigo, flu-like symptoms, and excessive thirst—and none of the doctors I’d seen could give me a concrete answer.

At the time, I was working at a startup in Baltimore. I chalked it up to too much coffee and too little sleep. Over time, the symptoms got progressively worse. I would go to work having pounded ibuprofen, coffee, and anxiety medication. Because I presented as “normal,” any time that I mentioned needing to rest or take some time to look after my health, everyone from doctors to friends either directly or indirectly told me that I was simply bad at stress management and everything was all in my head.

I felt hopeless. My symptoms were impacting my ability to work and enjoy life, but no one seemed to take me seriously. Doctors would do blood work, note that it all came back normal, and say “Let’s see if things have improved in six months” without prescribing me anything except for occasional nausea or anxiety meds.

Eventually, I quit my stressful startup job, thinking that perhaps my symptoms would go away if I could achieve a better work-life balance. Spoiler alert: they did not. As time went on, I started developing sensitivities to many of my favorite foods and drinks. After eating them, my light-headedness and excessive thirst would increase significantly. I began tracking both my food intake and my symptoms and, after finding a near-perfect correlation between fainting and three different foods and beverages, I went to an allergist. She promptly told me that I’d made it all up and needed to work on my food phobias.

I had to quit two more jobs due to how much my symptoms impacted my ability to work. Last year, things crescendoed. My excessive thirst led me to drink so much water that I was hospitalized for hyponatremia (low blood sodium) and my vertigo and headaches became unbearable. I also began to experience overwhelming brain fog that prevented me from getting anything done or learning anything of substance while working.

After ruling out diabetes, my doctors simply told me to drink less water; the thirst was probably all in my head. I spent hours each day on the phone calling specialist after specialist asking them to see me, following up on test results, having my medical records sent to other facilities, and handling all of the other logistics of seeking treatment for my unidentified illness. I also began diligently documenting every aspect of my daily life. This comprehensive log—detailing what I ate, drank, did, and the symptoms I experienced—became crucial. Before each doctor’s visit, I’d analyze and share key highlights from the data to ensure that I wouldn’t waste time rehashing old details and to preemptively address any simplistic theories they might want to revisit.

I had all but given up when I stumbled upon a health podcast in which the host is told by a specialist that she is demonstrating hallmark symptoms of Chronic Inflammatory Response Syndrome (CIRS). She was the first non-diabetic person who I’d heard mention that she experienced excessive thirst as a symptom and her other symptoms matched mine almost completely. Excitedly, I began googling the condition to learn more, despite having been told over and over by well-meaning but misguided friends, medical care providers, and family that I should avoid self-diagnosing or reading too much about illnesses online. I was tired of letting the “experts” mishandle my health and my life.

I learned that CIRS is a chronic condition that causes inflammation in the brain and can eventually lead to other autoimmune diseases and neurodegenerative disorders. It often develops when someone who is genetically susceptible to the types of molds and bacteria that are prevalent in water-damaged buildings gets exposed to those pathogens. Because CIRS patients are unable to handle that exposure the way that the rest of the population can, they get sicker and sicker unless they get treatment.

Common CIRS symptoms include flu-like symptoms, headaches, brain fog, blurry vision, light-headedness, excessive thirst, and weight gain. If left untreated, the brain gets so inflamed that many begin to experience dementia-like symptoms. Additionally, CIRS can even cause or exacerbate pre-existing anxiety.

I found a specialist who works with Dr. Andrew Heyman, a leading researcher on CIRS. After several weeks of extensive blood work, brain scans, and other testing, the diagnosis was official: I had CIRS. Knowing how serious CIRS is, I am glad that I listened to my gut. I only wish that I had been more insistent that it wasn’t just in my head so that I could’ve received a diagnosis sooner.

Looking back, I realized that my experience is not unique. Disabled individuals often struggle to have our symptoms taken seriously by the medical community. I had to fight for years to get the proper diagnosis and treatment and it was only because I stumbled upon a podcast that I finally found some answers. According to studies by Dr. Heyman, over 20% of the population is genetically susceptible to the disease, although the gene has to be activated by a precipitating event for the individual to develop CIRS. I wonder how many people are silently suffering with the disease that I am now being treated for.

The struggles that disabled individuals face extend beyond the medical community. We also face discrimination in the workplace and in our everyday lives. As someone who experienced CIRS as a result of a water-damaged work and home environment, I feel that it’s important to speak out about workplace and tenant rights and safety as they relate to disabilities.

The repeated dismissals I faced aren’t merely personal grievances; they expose a systemic failing. People with disabilities, chronic illnesses, and other serious medical conditions shouldn’t have to sit on waitlists and fight to be taken seriously when they finally do get to see a doctor. As infuriating as my experience was, my education and majority ethnic identity made it easier for me to rebut doctors’ dismissals, flooding them with data, carefully reasoned arguments, and ultimately demands to be treated better.

A system that prioritizes only those who can advocate for themselves creates barriers for the less privileged and for those with intersecting marginalized identities. Whether inadvertent or by design, the way that the healthcare system works today falls short of respecting human dignity, to the detriment of society. Every individual deserves a voice, care, and understanding. We need more than hope. We need actionable change that ensures every person’s health and well-being is genuinely prioritized.

Mia Tompson (she/her) is a graduate student with a chronic illness. She lives in Boston, and when she is not studying or working, she enjoys baking, photography, and swimming.