I Doubted Her Pain Until I Admitted My Own

A mother’s illness, the pain I refused to name in myself, and the diagnosis that finally connected us… and became the reason Gouldilocks exists.

Let me start with the hardest sentence I have to write.

For a long time, somewhere in the part of my brain I didn’t say out loud, I suspected my mom might be a hypochondriac.

I want to be careful here, because this isn’t a story about anyone failing her. My family loved her fiercely, and what we all did was the most human thing in the world: we looked at a long, scattered list of complaints with no obvious thread connecting them, and in the absence of a name, we reached for the simplest explanation available to us. Anxiety, maybe. Sensitivity. A woman who felt things more than most. None of us said it unkindly. Most of us didn’t say it at all. But I carried a quiet version of that doubt for years, and it’s taken me a long time to be able to write that sentence instead of just feeling it.

She had headaches, jaw pain, hand and wrist pain, skin issues, and a dozen other ailments that never seemed to connect to anything. So we didn’t look for a connection. We assumed there wasn’t one.

She was sweet. She was funny, a little silly in the best way, and she loved dollhouse miniatures and gardening and the particular joy of a well-organized collection. And underneath all of that, she was sick, for most of her adult life, with something nobody had a name for yet.

I did not know that I would spend my own adult life collecting the same unconnected list.

The Kid Who Just Needed to Try Harder

I wasn’t exactly a portrait of health myself, though nobody clocked it as anything more than quirky, or honestly, as a character flaw. I was chronically underweight, I’m talking ninety-ish pounds well into my twenties. Eczema on my legs. Skin so fragile I bruised if a cat walked past me wrong. I was hypermobile in the way that’s fun at parties (legs behind my head, hands folded backward into a pretzel of a prayer position) and also clumsy in the way that’s less fun anywhere else. Poor vision, an intermittent lazy eye that showed up exactly when I was most tired and least able to explain it. A bit of a speech impediment. Real trouble with math and spatial reasoning.

What I actually got, instead of any explanation, was a label: the lazy kid who needed to work harder and stop daydreaming. That one stuck for a long time. It’s a strange thing to carry into adulthood, the residue of being told a body doing its best impression of falling apart was actually just a focus problem.

I missed a lot of school. Stomach aches. Bloating. A kind of fatigue that wasn’t really tiredness so much as being tired and wired at once, unable to rest even when my body was clearly done. At sixteen I was diagnosed with an anxiety disorder. A year or two later, panic attacks.

Nobody connected any of it. Why would they? It looked like a hundred small, easily dismissed things. Looking back, that’s actually the tell. The list itself was the diagnosis. None of us knew how to read it yet. And by college, I got really very good at hiding it all. I perfected masking and compensating for how hard things were by caring and trying ten times more than everyone else in the room.

The Name, Finally, in Her Sixties

My mom got her answer in her sixties, when another family member was diagnosed with something rare enough that it sent her looking, and the looking led her, finally, to a name: hEDS, POTS, and MCAS. The trifecta. Three syndromes that travel together so often there’s practically a group rate.

Suddenly the whole impossible, scattered, lifelong list made sense. The headaches. The fatigue. The skin. The weak stomache. All of it, one underlying thread the entire time.

And almost nobody around her fully understood what that meant, or how genuinely debilitating that combination is, even once it had a name. A diagnosis doesn’t automatically come with comprehension from the people around you. Sometimes it just gives the disbelief a slightly more specific shape.

She got worse from there. By 2023 she was cycling through hospital stays and rehab centers. Eventually she told us she couldn’t swallow safely anymore, couldn’t manage anything with texture, and she got a feeding tube to keep her nourished while everyone tried to keep up with a body that kept finding new ways to fail.

And then, at 72, her thoracic aorta dissected. If you don’t know where in your body that is, neither did I, before this. It looked, from the outside, like a heart attack. It wasn’t. It was a structural failure, the kind that happens almost exclusively in people with connective tissue disease. The kind of thing nobody warns you about until it’s the reason someone is gone.

I tried to be there for her medical journey. I want to be honest, even now: it still took me longer than I’m proud of to fully understand what she’d been carrying, and I never got the chance to tell her that I finally did.

Then It Started Happening to Me

Here’s the part of the story I genuinely did not see coming, even though, in hindsight, it had been coming for thirty-some years.

In the decade after my mom’s diagnosis, and especially in the years after COVID, my own body started falling apart in the exact scattered, impossible-to-connect way hers always had. Heart palpitations. Blood pressure spiking into hypertensive crisis range, the kind that frightens a primary care doctor. Allergic reactions, including asthma and full anaphylaxis, that an allergist tested and tested and could never pin to an actual allergen. You must just be sensitive to something in the environment, they told me. How odd, they said. How odd, I agreed, and went home unsatisfied.

My jaw started locking with TMJ pain so intense that it once stayed locked for four months, requiring an oral surgeon and a PRP procedure just to get it moving again. I sprained the same ankles repeatedly. My wrists and hands ached for no clear reason. I had shingles on my face. Bronchitis that wouldn’t fully clear. Bladder and pelvic floor issues we chalked up to childbirth. Kidney infections. A frozen shoulder during COVID that required round after round of cortisone and months of physical therapy, and the moment it finally healed, the other shoulder froze the following year, and I did the entire thing again.

I started having dizzy spells, sweating episodes, a tingling, prickling sensation in my hands and feet that came and went without warning. My stomach bloated until eating even a normal meal left me uncomfortably, alarmingly full. My sleep fell apart in two directions at once: I’d fall asleep at the dinner table or in the car no matter how hard I fought it, and then lie awake at night with my heart pounding like something dangerous was about to walk out of the closet.

Every doctor I saw treated each of these as its own isolated, unrelated complaint. Because that’s how the system is built. Nobody is incentivized to ask what connects the headaches to the shoulder to the bladder to the heart palpitations. You get fifteen minutes and one chief complaint, and the thread, if there is one, is yours alone to find.

But I kept thinking about my mom. About the specialist in EDS, POTS, and MCAS that she’d mentioned once, practically in my own backyard, after she’d found her way to advocacy communities and the Ehlers-Danlos Society in her final years and felt, for maybe the first time, relieved. Not happy that she was sick. Relieved that it finally had a name.

So one day, I made an appointment. My stated reason was practical: my mom had died suddenly from an aortic dissection, it can run in families, and I wanted to know if I should be screened. But by the time I was filling out the intake questionnaire, something in me already knew this appointment was going to be about more than my aorta.

The Appointment That Changed Everything

Dr. Saperstein spent over an hour with me. Family history. A full symptom inventory. Measuring my joint hypermobility against what I now know is called the Beighton scale. Working methodically through a checklist that, at the time, just felt like a doctor finally paying attention.

He noticed things I had stopped mentioning to anyone because nobody had ever found them relevant: small bumps on my skin, tissue-paper-thin scarring, stretch marks in places that don’t usually stretch, persistently dry skin, dry eyes, dry mouth, gum problems, nails that broke if I so much as looked at them wrong, skin that was thin and strangely stretchy. One by one, he was building a picture I hadn’t known existed.

I left that first visit with a triad of working diagnoses, more like categories at that point than confirmed conditions. Dysautonomia, an umbrella term, with more testing needed to determine which kind. EDS or some related connective tissue disorder, pending further workup. MCAS, or some form of extreme chronic mast cell activation, also pending testing.

I sat in my car afterward feeling two things at once, fully and simultaneously: shock, because apparently I was such a textbook presentation that a specialist could spot the pattern almost on sight, and a relief so deep it nearly knocked the wind out of me. Someone, somewhere, finally looked at the entire scattered, decades-long list of my body’s complaints and saw one story instead of forty unrelated footnotes.

Where It Landed

In the years since, the list has only gotten longer and more specific. What started as hEDS has a connective tissue disorder (Col15A) variant of uncertain significance that the geneticist expects will likely be reclassified as classical EDS as more data comes in. What started as POTS turned out to be neuropathic POTS with hyperadrenergic features, confirmed by norepinephrine surges in my bloodwork as high as 1400, alongside small fiber neuropathy with sudomotor involvement, meaning the nerve damage extends well beyond just the cardiovascular piece. What started as suspected MCAS was eventually confirmed directly, pulled from a sample during one of several pneumonia-related hospital stays, showing extreme inflammation and hyperactive mast cells in unmistakable black and white.

So that’s the origin story. That’s how I found out, and more importantly, that’s what it cost to find out, and why I built this instead of just quietly living with the answer.

Because somewhere in the middle of all that testing, I realized this could be the thing my mom actually needed during her time on earth and never fully got: access, advocacy, and the simple experience of being believed before it was almost too late to matter.

She needed to be understood and seen. So do I. So does almost everyone reading this right now.

This started as a tribute to my mom, and as a way to make peace with the quiet doubt I carried for too long, a doubt I know now wasn’t unique to me, and wasn’t anyone’s failure so much as the natural result of a disease with no name and no map. I wanted to honor what she carried for decades, largely alone, and turn it into something that might spare someone else even a fraction of that wait.

It’s grown into something bigger than that now. But that’s still where it started, and that’s still why I’m here.

Welcome to Gouldilocks. I’m really glad you found your way here, however you got here.