Episode 29. Using Humor And Art To Navigate Life With Chronic Illness With Kay Samuelson
Redefining Chronic Illness and Migraine Advocacy
On this episode of Migraine Heroes, I’m honored to sit down with the inspiring and unapologetically candid Kay Samuelson, the creative mind behind the highly popular Instagram page, Chronically Candid Memes. Kay’s page is an invaluable space for those navigating the turbulent waters of chronic illness. Through humor and honesty, she offers a breath of fresh air to her audience, blending wit with raw, unfiltered truths about living with an invisible illness. But Kay is so much more than her meme page. She’s an artist, an advocate, a woman who’s redefining what it means to live with chronic pain, and most importantly, she’s a voice for those who feel voiceless.
Her journey with chronic migraine began early in life, and like so many migraine sufferers, her story is marked by years of self-doubt, medical gaslighting, and the silent struggle to make sense of an illness that refuses to be fully understood. Kay opens up about her life before she embraced the label of “migraineur”— a journey that took her from Disneyland dreams to the disorienting realities of a life marked by pain. This conversation touches on everything from the systemic failures of modern healthcare to the very personal, internal battles we all fight when trying to legitimize our pain.
The Early Days: A Migraineur Before She Knew It
Kay grew up in Southern California, just around the corner from Disneyland — a place filled with joy, laughter, and a sense of endless possibility. But her childhood also had another dimension, one marked by the onset of migraine attacks. At just seven years old, Kay experienced her first migraine after watching a church musical. What she didn’t know then was that this event would be the beginning of a long, complicated journey through chronic illness.
Kay’s story isn’t unique in the migraine world. For years, she dismissed her symptoms, telling herself that what she was experiencing wasn’t a "real" migraine. In her mind, migraine attacks were reserved for people who had pain so severe they couldn’t leave a dark room. She gaslit herself into believing that her pain wasn’t significant enough to deserve medical attention. She minimized it, like so many do, in order to survive the daily grind of living with an illness no one else could see.
A Lifetime of Self-Gaslighting
One of the most striking moments in our conversation is when Kay describes her long-standing habit of invalidating her own pain. It’s a pattern that’s all too familiar for people living with chronic illness.
“I gaslit myself for years”
She pushed through the daily headaches, brushed aside the growing severity of her symptoms, and convinced herself that what she was experiencing didn’t qualify as a migraine. It wasn’t until she finally sat down with a neurologist — after years of silently suffering — that she realized the extent of what she had been enduring.
“I remember the neurologist asking me, ‘How often do you get headaches?’ And I casually said, ‘Oh, I have a headache every day,’ as if that was normal. The look on his face said it all,” Kay recalls with a laugh, though there’s a deep undercurrent of pain in her voice. For four straight years, she had experienced headaches every single day, but never considered them migraine because they didn’t present in the classic, textbook way.
This conversation with her neurologist marked a turning point. Kay was formally diagnosed with chronic migraine, a moment that was both validating and overwhelming. It was a moment of relief — finally, there was a name for what she had been experiencing — but it also opened the door to a new set of challenges: how do you manage an illness that, for so long, you refused to acknowledge?
The Psychology of Chronic Illness
In our conversation, Kay talks a lot about the psychology of living with chronic illness. The constant battle to validate your own pain, especially when you’re repeatedly dismissed by doctors, friends, and even family members, can lead to a deep sense of isolation. For Kay, this sense of invalidation didn’t just come from external sources — it was internalized. She doubted her own experiences, constantly questioning whether her pain was "bad enough" to warrant attention.
This psychological burden is something that so many chronic illness sufferers face. We’re taught to prioritize our pain, to decide what symptoms are "worth" bringing up in a doctor’s office. Kay recalls making mental lists of her symptoms, trying to decide which ones were the most important to mention at appointments, knowing that if she brought up too many, she risked being labeled a hypochondriac. “It’s like you have to convince yourself that your suffering is legitimate before you can even try to convince a doctor,” she says.
This is where the idea of self-gaslighting comes in. Chronic illness forces you into a position where you constantly have to prove the validity of your experience — not just to others, but to yourself. It’s a form of survival, a coping mechanism to deal with the overwhelming nature of invisible pain.
A System Not Built for Us
Another powerful theme in our discussion is the inherent flaws in the medical system, particularly when it comes to treating women with chronic illness. “The medical system was not built for us,” Kay states matter-of-factly, echoing a sentiment shared by so many women. Historically, medical research has been centered on the white male body, leaving women — and especially women of color — marginalized and underrepresented in healthcare.
For Kay, this bias became glaringly apparent during her years of navigating the healthcare system. She was told time and again that she was "too young" to be dealing with chronic illness, that she "looked too healthy" to be in pain. These dismissals only served to deepen her self-doubt, reinforcing the idea that her pain wasn’t real, or at the very least, wasn’t serious enough to deserve attention.
What’s particularly insidious about this form of medical gaslighting is that it shifts the burden of proof onto the patient. Instead of doctors taking the time to investigate the root causes of a patient’s symptoms, they often dismiss those symptoms if they don’t fit into a neat, predefined box. This leaves patients like Kay questioning whether their pain is real at all.
Chronic Illness as a Woman’s Issue
In many ways, Kay’s story is a microcosm of a much larger issue: the way society and the medical community treat women’s pain. Chronic illnesses, particularly those like migraine, autoimmune diseases, and fibromyalgia, disproportionately affect women. Yet, women’s pain is often trivialized, dismissed, or misunderstood. Kay is unflinchingly honest about this reality, recounting the many times she felt invisible in doctor’s offices, her concerns brushed aside simply because they didn’t fit into the male-centered framework of medicine.
This bias isn’t just a failing of individual doctors — it’s systemic. And it’s a problem that women have been facing for generations. “We’re taught to doubt ourselves,” Kay says, reflecting on how this societal conditioning seeps into our psyches. We’re told that our pain isn’t real, that we’re being too emotional or too dramatic, and we internalize these messages. It’s no wonder that so many women, like Kay, spend years gaslighting themselves before they finally seek the help they deserve.
Embracing Advocacy and Humor
Kay’s turning point came when she decided to take control of her narrative. Instead of allowing the medical system to define her experience, she began advocating for herself and others. This advocacy took many forms — through her memes, her embroidery, and her unrelenting honesty about what it’s really like to live with chronic illness.
Chronically Candid Memes became her platform for sharing the absurdities, frustrations, and occasional humor of life with chronic illness. “Sometimes the only way to deal with pain is to laugh at it,” she says, and her Instagram page is filled with memes that strike the perfect balance between humor and hard-hitting truth. Her posts touch on everything from the endless doctor appointments to the ableism that permeates daily life for people with invisible illnesses.
But beyond the humor, Kay’s work is deeply rooted in advocacy. She’s committed to changing the way we talk about chronic illness, both in the medical field and in society at large. Through her memes, she creates a space where people with chronic illness can feel seen, heard, and validated — a space where their pain is acknowledged, and their experiences are respected.
The Body-Mind Connection: Understanding the Vagus Nerve
As our conversation deepened, Kay and I delved into the complexities of chronic illness and its ties to the vagus nerve — a topic that’s gaining traction in the medical world. The vagus nerve, which runs from the brain through the chest and abdomen, is responsible for regulating many of the body’s essential functions, including heart rate, digestion, and inflammation response. It’s also intricately connected to migraine and other chronic pain conditions.
Kay’s migraine, like so many others’, are often linked to dysregulation in the vagus nerve. This nerve is a critical player in the body’s parasympathetic nervous system, which controls the body’s rest-and-digest responses. When the vagus nerve is out of balance, it can lead to a cascade of symptoms that impact nearly every aspect of a person’s health — from gut issues to chronic pain to mental health struggles.
Understanding the vagus nerve has been a game-changer for Kay, offering her a new lens through which to view her illness. “It’s like everything is connected,” she explains, “and when one part of the system is off, everything else goes haywire.” This holistic view of the body has allowed her to approach her treatment from a more integrative perspective, focusing not just on symptom management, but on addressing the root causes of her illness.
Kay’s story is one of resilience, courage, and an unyielding determination to reclaim her life from chronic illness. She’s not just an advocate for herself — she’s an advocate for all of us who live with invisible pain. Through her humor, her art, and her unwavering honesty, she’s changing the narrative around chronic illness, reminding us that our pain is real, our voices matter, and we deserve to be heard.
If there’s one takeaway from this episode, it’s this: Don’t gaslight yourself. Your pain is valid. Your experiences are real. And you are worthy of care, respect, and compassion.
Migraine Heroes podcast stands as a testament to the strength of the human spirit and the transformative power of holistic approach, understanding, and support.
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