The Patient Who Googled Her Symptoms
…and was totally right
Welcome to Ask The Patient, a doctor’s love letter to patients everywhere. Together, we’re reclaiming the stories that make medicine human. If it speaks to you, share, like, or subscribe.
Sam stood in front of the mammogram machine and had a bad feeling about it.
A couple of weeks earlier, she’d noticed a pimple-like spot on her right breast. Within days, it ballooned into a swollen, throbbing pocket of pain so raw that even the thin paper gown she was wearing now felt like sandpaper against her skin.
How am I supposed to survive this machine squeezing my boob? she thought, face red with dread.
At 32, Sam had never had a mammogram. She knew they weren’t kind. She just didn’t know how unkind they could be.
By the time Sam finally got in to see the first doctor, her right breast had grown an entire cup size: angry, hot, and tender to the touch. She was told it was mastitis and was started on antibiotics. But she didn’t get better.
“Why would I suddenly develop mastitis, I wasn’t breastfeeding,” Sam told me later. “So I went home and Googled my symptoms. And I realized I probably had HS.”
Hidradenitis suppurativa (HS) is a chronic inflammatory skin disease that causes deep, painful, draining lesions, most commonly in private areas. It affects over 2.5 million people in the U.S. alone, disproportionately women and women of color. Awareness has grown in recent years, thanks largely to patients themselves: advocates, support groups, and social media communities that refuse to stay silent.
By the time she saw the second doctor, Sam’s breast had turned fiery red, radiated heat, and pulsed like it was one breath away from bursting. She told the new doctor that her online research suggested she might have HS.
He smirked…the kind you’d expect from a doctor who proudly owns a mug that says:
Please Do Not Confuse Your Google Search
With My Medical Degree
Yup, you know the kind.
“Let’s not get distracted by Google, OK?” he said, brushing Sam off. He ordered an urgent workup for inflammatory breast cancer and referred her to breast surgery.
Which is how Sam ended up standing before the monstrous machine, whose thick plastic beaks poised to bite.
“I don’t think this is a good idea,” she called to the technician behind the glass.
The technician, used to pre-compression protests, offered the standard line: “Oh, you’ll be OK, honey!”
She wasn’t.
The machine clamped down with so much force that Sam nearly fainted. Just when she thought it couldn’t possibly squeeze harder, it squeezed harder. Then, with a horrifying POP, the angry, swollen mass ruptured.
Gray-white fluid sprayed everywhere: the machine, the wall, the stunned technician’s window. It was chaos painted with a thick layer of humiliation.
“Breast cancers don’t do that, do they?” Sam told me when she recalled the incidence to me, cheeks still flushed years after the fact.
By the time Sam saw the breast surgeon, the mammogram had already ruled out cancer.
“I told him I thought I had HS without mentioning my Googling.” She paused, eyes bright with the memory. “And guess what he said?”
“What?” I asked.
“He said, ‘What’s that?’”
Sam’s Google search was right. She has HS. Not only that, she had out-googled every doctor she’d seen so far. Sam is now on an injectable medication and doing really well. And her road to feeling better is largely paved by her own research. That’s three for zero. Take that, medical degrees!
Now, personally, I have never dismissed a patient’s Google search.
…Okay. I’m lying.
I have. More times than I’d like to admit.
I remember the first time I learned the infamous line: “Okay, but where did she go to medical school?”
It was my first day as an intern. The day before, I’d been Zed the fourth-year medical student, wearing a short white coat, residing in the bottom of the hierarchy, and terrified of every attending.
Twenty-four hours later, everyone suddenly called me “Dr. Zha.”
If you had spent a decade chasing that title, gambled your entire life savings (that you didn’t yet have) on becoming a doctor, then found yourself, literally overnight, in charge of decisions that could save or hurt a life…you’d know the visceral disbelief. The crushing imposter syndrome. The fear of making the biggest mistake of your life – or, worse, someone else’s life.
You’d know the feeling of undeserving, so deep that you could cry.
I still do.
Yet on the surface, the only emotion you are allowed to show is pride. That glacial divide of who I was and who I was expected to be carved a steep, hollow canyon within my soul and made me cling to any breadcrumb that suggested I was, indeed, good enough.
So when a senior resident patted my back after hearing that a patient doubted my diagnosis and said: “Ask her: where did she go to medical school?” I felt my spine straighten.
That’s right, I thought. Where?
The journey to unlearn that reflex of shrinking someone else so I could feel bigger would take me years after that. Many of you reading this have been with me throughout that journey.
You’ve held my stories with tenderness and grace. You’ve shown me, over and over, that the doctor patients need isn’t the one who sits up straighter, but the one who leans closer to listen, and to believe.
Thank you for walking this journey with me through stories, reflections, and your own experiences. If this piece made you think of someone, feel free to share it. That’s how this community grows.
And if you’re reading this without a subscription, you can join for free. It’s weekly, reflective, and I’d be grateful to have you along.
“I Googled my symptoms and…” another patient told me recently.
The moment she said the word Googled, her face shifted into a timid, apologetic expression.
“I know—I know—” She lifted her hands, looking at the floor. “I’m sorry. I shouldn’t be looking things up…”
Which told me exactly how many times someone had shut her down at this exact line, probably while sipping coffee from a certain mug.
Swap out Google with TikTok, ChatGPT, Facebook groups, a nurse cousin…the judgment stays the same:
If the source of information isn’t me, it can’t possibly be right.
You must look small, so I can look big.
I call BS.
Imagine apologizing to your realtor for researching what kind of home your family needs. Or telling your college advisor you’re sorry you came prepared to discuss your own future. It would be absurd.
Why shouldn’t you take an interest in your own body?
Patients who research their symptoms aren’t trying to earn a medical degree (eyeroll) or challenging their doctors’ knowledge. They are reclaiming autonomy, soothing fear, making sense of suffering, and holding onto hope.
And sometimes, when medicine doesn’t listen, the search is survival.
“You ABSOLUTELY should be looking things up,” I told her, clapping once for emphasis. She startled, then narrowed her eyes as if asking: Are you being sarcastic?
“I’m serious,” I said, scooting closer. “It makes my job so much easier. Tell me what you found.”
She relaxed, then grinned. “Does that mean I get a discount?”
“A steep discount and free peppermint mocha!” I answered.
Preferably served in this mug:
P.S I thought it’d be hilarious to actually make the mug.
And, well, I did.😂
For anyone whose coping mechanisms mainly include caffeine, sarcasm, and maybe just a healthy dose of patient advocacy…cheers!
Ask the Patient
Each week, I end with a question for reflection. Perhaps through sharing, we can help someone else feel a little less alone.🩵
Have you ever mentioned your own research or expertise to a clinician and received an unexpected reaction, positive or negative? What did that interaction reveal about them?
I’d love to hear from you.
I don't think I'd still be alive now if I didn't google my symptoms.
My thyroid goiter grew so huge that it was crushing my esophagus and windpipe, constricting my dominant jugular vein and carotid artery and cutting off blood flow to and from my brain, pushing my spine out of alignment, and growing directly downwards into my lungs.
Nobody noticed this on CT scans or MRIs. Nobody listened to my symptoms properly aside from my therapist, and all he could really do was trust me and write referrals to specialists for me. Almost none of the specialists took me seriously. Many of them flat-out mocked me for googling and asking questions. One decide I had Munchausen's in the first 5 minutes of our appointment, and his opinion alienated several more.
I had to learn how to read medical imaging *and* scour hundreds of medical journals to find information about what might be wrong. I was mostly bedridden from the symptoms, so I spent hours lying in bed researching, because what else could I do? But I had to learn so much from scratch because I was never a science person to begin with.
Even when I finally realised it was my thyroid and could show clear proof on multiple medical scans and cite medical research to back me up, the first two specialists I spoke to dismissed me completely. When I finally saw a competent thyroid surgeon, he immediately pointed out all the problems on the first CT scan he looked at. That scan was over 6 months old and countless other specialists had reviewed it and sent me away.
He got me in for a full thyroidectomy 3 months later (fast for our public system) and by the time I had surgery I could barely eat, was struggling to breathe most days, and spending 90% of my time asleep because my body was basically trying to hibernate to survive.
But all those symptoms I'd been begging doctors to believe existed for 2+ years? Yeah, they were completely gone when I woke up from surgery. All of them. And even the surgeon (who'd believed me to begin with) told me after the surgery that it had been even worse than he'd expected, and that he knew I was going to be feeling a lot better as a result.
The surgery was almost two years ago and I'm still processing all my feelings about it all. But I choose my doctors very carefully now, and if a doctor doesn't trust me to know my own body, that's the last time they'll ever see me again.
Thank you for learning to listen to patients and trust them. 💗
In the early 1990s, my father had debilitating pain spreading in his arm and across his body for some unknown reason. This was before the internet, so he applied his electrician knowledge which he had garnered through working as a painter with builders, plumbers, electricians, etc. over many years on various buildings. The body is like a building, sometimes, right? What if the nerves were suddenly wired the wrong way round, to deliver pain instead of feeling? They dismissed his words.
18 months later, under a different doctor who actually listened, he was diagnosed with a rare condition called Reflex Sympathetic Dystrophy (now known as Chronic Regional Pain Syndrome). When they explained the diagnosis, they began by explaining the nerves as electrical wires, which in his case were now carrying pain instead of feeling, pretty much the same words he'd used 18 months before.
Five years later, he delivered a lecture at a university hospital to doctor students, on lived experience of his condition.