Dear Kathleen Stock, I Am Not a Victim of “Social Contagion”...

...rather, I have suffered because of people like you.

An article was recently published in the Times by Kathleen Stock, a British philosopher, prominent author, and gender-critical feminist. The article was titled “Why Are Young Women Using Walking Sticks?” and focused on the uptick in mobility aid usage and autonomic dysfunction amongst young women. I thought the article would address some of the common misconceptions about invisible and dynamic disabilities and cover stories from women impacted by this experience. But I was mistaken.

Instead, it was an opinion piece on her ideas of the supposed psychological and sociological reasons for this surge. But what made this article truly stand out was her constant implication throughout that many of the young women who use mobility aids were simply victims of “social contagion,” and not actually disabled at all. She blamed social media for encouraging this uptick, claiming it was the result of making mobility aids look “trendy” and “fashionable.” She called the behavior “neuroticism and fear,” and emphasized pushing young people to “get them out into the world as functioning adults, wherever that is possible.” She ended the article by saying,

“For their sake, we need to help them ditch the props, and — quite literally — to stand on their own two feet.”

But unlike what Kathleen implies, I am not a victim of “social contagion.” Rather, I’m in therapy because my brain refuses to accept the current state of my body with dysautonomia. Because no matter how affirming I am, sometimes I hate being seen with a cane and a walker on dates. Or be pestered with questions, like “What happened?” or “When will you get better?” Because I know I won’t get better. This condition is a sort of life sentence. To have people treat me like I’m broken because they see my mobility aids hurts terribly. I didn’t choose this. I wouldn’t choose this. My mobility aids aren’t fashion items; they are how I push forward when my body can’t.

It’s not fun. It’s traumatic. It’s not trendy. It’s isolating. To chalk my symptoms up to being duped by trends and call my autonomic nervous system dysfunction and hypermobility “vague medical phrasing” negates everything I suffered and fought through to get my diagnosis and support myself. I am not weak. I am not incapable of experiencing hardship. It’s not fun. It’s my life. Because those are the cards I was dealt.

One thing Kathleen is not wrong about is that social media is to blame for my starting to use mobility aids. Because doctors gave me a clean bill of health every year I went, no matter how many issues I had. No matter how much pain I was in, it was just growing pains. No matter how dizzy or strange I felt, it was just dehydration. Every year, during every physical check-up, I’d hear the same words, “Everything looks good, see you next year!” And I believed them. Until I could no longer deny what was happening in my own body.

Social media showed me a different side of the story. It showed me I wasn’t alone. It showed me I wasn’t weak or sensitive for pointing out the constant discomfort I was in. It showed me femmes who said, “This isn’t normal,” and made me realize that it’s okay to take care of your body rather than stressing it until it breaks. And after a while, I started listening, because that’s exactly what happened.

I launched my career at 14, starting out by shadowing educators at local homeschool co-ops and small groups. Eventually, I built a curriculum for K8 learners that exploded nationwide during COVID, growing my success from just serving friends and family to a multi-state nonprofit operation. Suddenly, I was thrust into the national spotlight, being interviewed by the media and becoming a CEO at just 18 years old. All while also entering college. By the time I was 21, I was considered a rising star in my field, well-known and liked by my many colleagues, and traveling often, sometimes even multiple times per month, for lectures and speaking engagements across the country. I fundraised six figures for my project, made dozens of partnerships with other nonprofits, and still taught at my own academy multiple times per week. I threw myself into my work while juggling my studies, my passion blinding me to the coming storm.

I had always been chronically sick as a child, dealing with recurring upper respiratory infections, chronic pain, headaches, hand swelling, and trouble breathing since I could remember. But everyone always chalked it up to me being dehydrated or needing to exercise more. So when I started getting sick more often and having more flares of chronic pain and dizziness, I didn’t think much of it. I was too busy building the career of my dreams. In 2022, I started experiencing skills regression, losing the ability to do things I would usually do easily. My energy dwindled.

By 2023, my appetite was poor, my brain was foggy all the time, and I was diagnosed with GERD and eosinophilic esophagitis. Doctors warned that it could put me on a feeding tube. I kept pushing, but my body was slowing down. I eventually got my autism diagnosis, which explained the severity of the burnout that was progressively getting worse. Still, I refused to acknowledge that I was struggling. Or that the trauma that was occurring in my life at the time, with deconstruction from a high-control religion and the subsequent backlash, the increasing burnout, and my grandmother’s diagnosis with dementia, had weakened my body. Little by little, everything I built was starting to fall apart. Including my own health. Because I wanted to “be strong.”

Until one day, during a retreat where I had intended to finally rest, I caught a deadly strain of the flu. I was bedridden for a week, and when I was finally able to stand, I went to shower and almost passed out. I remember being on the floor in the hotel where I had been quarantining, nearly in tears, as my mom was rushing over to help me, begging me to stay awake while I was losing grip of the phone in my hand. For a brief moment, I couldn’t hear, I couldn’t see clearly, and I could barely speak. I was on the floor, nearly unconscious, as my mom’s voice rang out, “Nasiyah, are you still with me?!” I remember telling my mom when she arrived, “Something isn’t right. I’m going to find out what.” The social media videos of the girls with the canes came back to my memory. Maybe all this time, I had POTS? Maybe I should see a doctor?

I didn’t get better. Over the next few months, I got weaker. Some days, I couldn’t even get out of bed. Showers became dangerous to do alone, and I couldn’t stand or walk for long periods of time before feeling faint. Running was no longer an option. Temperature and barometric changes flared up my health. After seeing numerous doctors in my city who treated me like I was crazy for asking, I traveled out of state to see a doctor who specialized in functional neurology, and she confirmed what I thought. I was diagnosed with dysautonomia, an autonomic nervous system disorder that causes the body to lose its ability to regulate blood pressure, heart rate, and many other basic functions. Only a short stint in physical therapy confirmed I was hypermobile, something I’d never heard of before.

A traumatizing hospital visit left me scared, as I lay there recovering from stroke-like symptoms. They said, “You sure it’s not just in your head, dear?” We later found out it was called an adrenaline dump caused by dysautonomia.

Today, my routine looks a lot different. I listen to my body. I use canes and walkers because they protect me in case I faint and stabilize my fragile, hypermobile body. I don’t push myself to do things or attend things if I’m not feeling up to it. I center my career around low-pressure and doing what I love. I pressure doctors to answer my questions and do research on my own to bring input to my appointments. I have to, because otherwise, no one else will. I don’t take “we don’t know” for an answer anymore. Some days, my health is back to the pre-flu normal; other days, I’m struggling to get out of bed. Recurring infections, dizzy spells, chronic pain, migraines, and doctor’s appointments line my calendar alongside the business meetings and grant proposals. I have to wear a mask in every public space to keep myself safe. Most of all, I never let anyone tell me that they know my body better than I do, or shame me for being young and disabled.

From her own writing, Kathleen would rather I live the first version of my life, where I hid my symptoms, nearly died, and pushed my body to the edge. Kathleen would rather I was bedridden because I kept pretending I was okay, chalking it all up to anxiety, just as many doctors have in my life. What Kathleen is suggesting is the real social contagion. It is the true trend. The trend which tells young adults that they should only look, act, and function one way, otherwise they are simply weak and exaggerating. That’s what doctors, family members, and nearly every professional in my life have ever said. But a few girls on social media inspired me to go to the doctor and change my habits to thrive with the body I have.

If I’d done this earlier in life, maybe I wouldn’t need mobility aids now. But here we are.

It’s messages like the one Kathleen is spreading that leave more kids and young adults vulnerable to ending up like me in the future. It’s the same tired words I have heard my entire life. “Just exercise, and drink more water, and you’ll be fine.” But we are not fine.

According to the Department of Health and Human Services, Long COVID impacts around 5-7% of the US population alone. We survived a pandemic. That left millions with trauma, health scars, and debilitating disorders we didn’t know were possible in such large numbers. More than 70 million people globally live with some form of dysautonomia and similar conditions. Numerous studies show that people who experience trauma are at greater risk of developing chronic illnesses later on in life. New research is coming out often on the various forms of EDS and how that connects to autism and ADHD, which many adults have now been diagnosed with. The conditions are real, and what’s worse, they’ve always been real. We are just the first generation to stop pretending they don’t exist.

Growing up in a religious Southern Black household, people believed that chronic conditions only affected the elderly, but lots of people had them. I watched aunties talk about fainting while cooking, and their hands changing color in the winter weather. I watched uncles and friends talk about recurring headaches, breathing problems, and seasonal infections. I watched people shrug off allergies, brain fog, and chronic fatigue as spiritual warfare or inherent weakness that needed purging. I saw my own family and friends suffer again and again, and shrugged it off as unproblematic.

I was mocked as a child for not enjoying the outdoors, when in reality, I struggled to breathe and walk when I was outside. I was told that my headaches were due to dehydration, and my constant bruising and injuries were me exaggerating my pain for attention. My childhood doctor’s favorite phrase was “Go home, and put some Vaseline on it.”

What Kathleen implies we should do to young women is what I have lived most of my life. And I still ended up here. I wasn’t coddled. I wasn’t encouraged to use mobility aids or see specialists. And here I am, having to deal with the unique kind of grief that comes with losing a body you once had (or maybe, just the illusion I once had it because I could easily hide and deny my own health challenges). Having to deal with the grief that my body is too frail to ever have my own children, and that if I could, I wouldn’t want to pass on these conditions to them anyway.

I choose every day to say, “Never again,” and educate other young adults about how to properly listen to their bodies and get effective treatments and answers from their doctors. To raise awareness about my conditions and encourage more medical professionals and parents to recognize the signs. That is how I channel this grief.

So, no, Kathleen, I am not a victim of social contagion. I am a survivor of people like you who think dynamic and invisible disabilities are trendy terms and fashion styles rather than life-altering, traumatic, unwanted experiences. This is not funny. I am not laughing. And you, Kathleen, should be ashamed of this article.

If you’re worried about young adults finally listening to their bodies and making the proper accommodations to still thrive, you don’t really care about the resilience of this generation. You care about our silence. I’ve lived the alternative you propose. It’s not pretty. I made a choice to never repeat it again. For me, my canes and walkers are resilience and bravery, not a cop-out.

Every day, I choose to live my life and push forward, even while stuck with a body that has failed me. And if you think that’s weakness, I question what strength looks like to you.