Most Things Biology

The Diary of Stina Lindqvist

Relief Is Not the Word

Fifty years with a rare disease that had no name, and the autumn it finally got one

A note before the entries

Stina Lindqvist is a pseudonym. The events in these entries come from a real medical history of familial Mediterranean fever (FMF), a rare inherited autoinflammatory disease that went without a name for nearly five decades. Some details have been changed, and words in quotation marks are as close to what was said as memory allows.

The entries run from a first-grade classroom to a dermatologist’s office in the autumn of 2026. The published research behind them comes at the end, so the diary can be read first for what it is: a life told from inside the delay.

The Entries

Age 6

First grade

Jenny P. said I have cootie spots and nobody would hold my hand in line for music. The spots are little and red and all over my tummy and arms, like somebody flicked a paintbrush at me. First they itch and then they burn. Mom put the white cream on again. The doctor said it is the soap, and I will grow out of it.

I am trying to grow out of it. I drink all my milk.

At recess I sat on the bench by the wall because nobody wanted to play with me. I told the nurse I didn’t feel good so I could go home, and then I really didn’t feel good. I got hot all over and slept on the couch until supper. Mom says I’m a funny kid, sick one day and fine the next. Tomorrow I’m wearing long sleeves even if it’s hot.

Age 9

The fitness test

My legs hurt at night again. It isn’t the outside, it’s the inside, like my bones are too tight. Dad calls it growing pains. If it was growing I would be the tallest kid in class, and I’m the third shortest.

Today we ran the mile for the fitness test. I finished. I was last, but I finished. By supper my shins were hot like the stove, red and puffy, and when I pushed on them the dent stayed. Mr. K. said some kids will do anything to get out of gym. I wasn’t getting out of gym. I already did gym. That’s why they hurt.

Age 11

A sensitive tummy

That’s the third time this year. It starts under my belly button and slides down low on the right, and I can’t stand up straight. My fever was 103. Mom drove me to the emergency room. A doctor pushed on my stomach and made me hop, and they took blood, and then they said it wasn’t my appendix, it was a stomach bug.

By Sunday I was fine. Totally fine, like it never happened. That’s the weird part. Everybody else’s stomach bug lasts a week. Mine blows in like a storm and leaves like somebody switched off a light.

Grandma says I have a sensitive tummy. I wrote SENSITIVE TUMMY inside the cover of my notebook, so at least it has a name.

Age 15

The first time I believed them

Last night I couldn’t breathe in. Well, I could, but every time my lungs filled up, a knife went in under my ribs on the left. So I took little panting breaths all night like a dog in August. Mom took me in at six in the morning. They did an EKG and an X-ray, and then they asked a lot of questions about school, and whether I had a boyfriend, and whether everything was okay at home. The doctor said it was anxiety. She said teenage girls carry a lot of stress in their bodies.

I didn’t feel anxious until she said that. Then I did.

Now I’m lying here wondering if I made my own chest hurt. If I can do that, what else am I making up? The spots? My legs? My stomach? From now on I’m not telling people when things hurt. It’s embarrassing to be wrong about your own body.

Age 16

Unremarkable

They took my appendix out on Tuesday. The surgeon called it textbook: fever, pain low on the right, white count up. He said I was lucky we caught it in time. Today at the follow-up he said the pathology report was back and the appendix was normal. “Unremarkable,” he said, like that was good news. I asked what caused the pain, then. He said sometimes these things are hard to explain, it was probably an early appendicitis that settled down or a virus, and anyway, it’s out now, so I’ll never have to worry about it again.

Three weeks later

The pain came back. Same place, same fever, new scar. I didn’t tell anyone.

Age 20

What the folder said

Today I read my own chart. The nurse at student health left the folder open on the counter while she went for a cup, and I turned it around. Under Assessment someone had written: Recurrent vague complaints. ?Somatization. Pt a bit of a hypochondriac.

Vague. A fever of 103 isn’t vague. An ankle swollen to twice its size that shrinks back to normal by Thursday isn’t vague either. The only vague thing in that folder is the explanation.

I cancelled on Laura for the concert, the third time this semester. She said, “You’re always sick,” and she didn’t say it nicely, and I can’t blame her. How do you explain an illness that has no name and never lasts? By the time anyone could see it, it’s gone. I’m starting to look like a liar to everyone, the girl in the mirror included.

Age 26

Dependable

They let me go today. My supervisor was kind about it, which made it worse. Eleven sick days since January, she said. She knew I worked hard, but the team needed someone dependable.

I wanted to tell her that I am dependable. I’m the most dependable thing I know. Every few weeks, regular as rent, my body sets itself on fire for two or three days and then puts itself out. You could set a calendar by me.

But nobody believes in a pattern that doesn’t come with a diagnosis attached.

Age 30

Try to relax

Month fourteen. After the appointment we sat in the car in the parking lot, holding hands, and neither of us said anything for a long time.

The doctor said the tests were “mostly normal.” The bleeding I’ve had since I was fifteen, heavy and flooding, is “within the range of normal for some women.” The pelvic pain that comes with the fevers is “probably ovulation.” She said a lot of couples conceive right after they stop trying so hard. She said, “Try to relax.”

I’ve been trying to relax for thirty years.

Age 33

Things That Were Not Anxiety

At two in the morning I woke with a pain in the middle of my chest. It got worse when I lay back and better when I sat forward, so I sat hunched over the kitchen table like an old woman over soup. In the ER the first doctor listened for a long time and said he could hear a “rub.” The echo showed a little fluid around my heart, and the EKG changes were “diffuse,” not a heart attack. Then the next shift came on. That doctor read my chart, looked at me, and said it might be anxiety. Or reflux.

There was fluid around my heart. I saw it on the screen. Anxiety doesn’t make fluid.

I’ve started keeping a list: the date, my temperature, where it hurt, how long it lasted, and what they called it. At the top of the page, in capitals, is the title: THINGS THAT WERE NOT ANXIETY.

Age 38

Perimenopause

I had a bone density scan today. The technician said “Oh,” and then nothing, which is how I knew. It’s low for my age. The endocrinologist said early perimenopause. My calcium was wandering and my vitamin D was low, and my morning cortisol curve was flat as a table. All of that was probably perimenopause too. Apparently everything that happens to a woman after thirty-five is perimenopause.

Nobody asked why a thirty-eight-year-old woman was losing bone. Nobody asked what was eating it.

On the list: THINNING BONES. “Perimenopause.”

Early forties

Ten folders

Here is who I have now: a neurologist, a neurosurgeon, a urologist, an audiologist, an ENT, a cardiologist, a gastroenterologist, a dermatologist, an endocrinologist, and a rheumatologist I saw once. Each of them owns one piece of me, and none of them talks to the others.

The neurosurgeon fixed the disc after the car accident. “The disc is fixed. Your pain should be gone.” It isn’t gone, so now the pain is my fault, or my head’s. The numbness in my feet is on both sides. The neurologist wrote that down and never wondered about it, because the car accident was there to take the blame. When a cold wind hits my face, it fires electric shocks along my cheek. High voices are going quiet: my students’ questions from the back row, the birds in the morning. My bladder has stopped telling me when it’s full. The MRI of my brain shows white spots, “more than expected for age,” “probably small-vessel changes or migraine.”

That’s ten doctors, ten folders and ten tidy explanations, and I’m the only person who has read all ten. I teach biology. I know what a system looks like when I see one, and this looks like a system.

2017

Page two

The genetic results are in my portal. Nobody called me about them. Most of the report is boilerplate, but page two lists a variant in a gene called MEFV.

I looked it up on my phone in the parking garage. MEFV: Mediterranean fever. Its protein is pyrin. The symptoms are fevers that come hard and then leave completely, and inflammation of the linings of the belly, the chest and the heart. Untreated, it can put amyloid in the kidneys.

I sat in that garage for forty minutes. It was me. Every line of it was me.

When I called the office, the nurse said the doctor had reviewed it and there was “nothing actionable.” I asked if I should see someone. She said I could bring it up at my next appointment if things changed.

Things have been changing for forty years.

We haven’t stopped trying. I wanted to ask whether any of this had anything to do with that. I didn’t. It felt like I’d already used up my one question.

2018 to 2025

The tally

These are the people I have said “familial Mediterranean fever” to, out loud, in an exam room.

One. “That’s a Mediterranean disease. Your family’s Swedish.”

Two. “I’m not really familiar with that.” Then back to the IBS.

Three. “You don’t have the background for it.”

Four. Silence. Typing. Next question.

Five. “Let’s be careful with Dr. Google.”

Six. “Interesting.” That was all she said. Interesting.

That’s six people licensed to practise medicine, and not one of them said “Let’s check.” Two decided my grandparents’ boat tickets ruled it out. The rest didn’t know enough to say anything, so they said nothing, and it turns out nothing is also an answer. It means no.

The seventh time, I didn’t say it at all. I just brought the printout and slid it across the desk.

The year we stopped

Quiet

We stopped trying this year. There was no particular day. It stopped the way a phone stops ringing: one day you notice it’s been quiet a long time.

We haven’t told anyone, because there’s nothing to announce. Nobody sends a card when a door closes. At the grocery store a woman I used to work with asked, “Did you two ever want kids?” I said, “We did,” and she said, “Well, it’s not for everybody.” Then she told me about her grandson’s soccer.

On the list, in pencil because I couldn’t make myself write it in pen: HEAVY BLEEDING. INFERTILITY. “Bad luck, or stress.”

The winter Mom died

The other lesson

We buried Mom today.

The tumor had been growing for years. It was the slow, patient kind that gives you headaches and changes your balance and your moods and sits there while everyone calls it age. She stopped going to the doctor a long time ago. “They’ll just tell me it’s nothing,” she said, “and then I’ll have paid for the privilege.” I used to argue with her. I’ve stopped arguing with anyone about that.

She’s the one who taught me to push through. She pushed through right up to the end. Today I learned the other lesson, the one about where pushing through leads you when nobody will look.

2024

A little protein

At a routine check, my urine had protein in it. “A little protein. Recheck it sometime.”

I know what protein in the urine means in a body that has been inflamed for decades. I teach it: the kidney’s filter is starting to leak. I wrote it on the list and underlined it twice. Then I went home and read about amyloid until two in the morning, which is what I do now instead of sleeping.

2026

The call

The seventh doctor ordered the panel. The call came today: two changes in MEFV. It’s familial Mediterranean fever.

“Well,” she said, bright as a birthday, “now you finally have an answer! That must be such a relief.”

I said thank you, three times, and hung up. Then I sat down on the kitchen floor. What came wasn’t relief. It was arithmetic.

2026, three days later

The arithmetic

The 2017 report is still in my portal. I opened it again tonight, and the answer was on page two. It had been sitting in my chart for nine years while I said the name of my own disease to six people who shrugged.

I did the math on the kitchen table, because that’s what I do. Forty-eight years from the first fever to a name. Nine of those years the name was already written down in my file. I can’t count the ER visits, and I stopped trying to count the “anxiety.” I counted one appendix, removed and normal. I counted one job, and I think two, if I’m honest about why I left the second one. I counted the friends who stopped inviting me because I always cancelled. I couldn’t count my kidneys. Nobody can tell me yet what those years cost them.

And the one I keep coming back to is the children.

In 2017 we were still trying. I’ve read the papers now. Untreated FMF is linked to infertility, and when the disease is controlled, fertility mostly isn’t impaired. Colchicine is considered safe in pregnancy. I don’t know if we would have had a child, and nobody can know. That’s the part I can’t forgive. It isn’t only that the delay may have taken the child. It took the chance to find out.

2026, six weeks on colchicine

Autumn crocus

Colchicine is a small white pill that comes from the autumn crocus. It has been the standard treatment for this disease since the 1970s, which is before I was born, or near enough. It’s old and it’s cheap. Six weeks in, the fevers are further apart and softer when they come. Last Tuesday I noticed it was Tuesday, and I felt fine, and I couldn’t remember the last attack.

That should feel like pure good news, and mostly it is. Then I look at the pill in my palm and think: this? This was all it took? A flower and a doctor willing to read page two?

The good news and the rage come in the same pill. I take them both with breakfast.

September 2026

The dermatologist

Today I saw a new dermatologist about my skin, the same skin that left me on the recess bench in first grade. She read my problem list, saw familial Mediterranean fever, and smiled at me. “You must be so relieved to finally have a diagnosis.”

I told her the truth. I said I’m filled with resentment and anger. She looked surprised, then uncomfortable, and then she looked at her screen.

I don’t think she meant any harm. I think people want a diagnosis to be the end of the story, the moment the music swells. For a six-year-old with a rash, it would have been. For a twenty-year-old with a folder that said hypochondriac, it would have been. At fifty-something, a diagnosis doesn’t open a door. It’s a light coming on in a room you’ve already lived in, showing you all the furniture you cracked your shins on in the dark.

Relief is for people who got their time back.

The last entry in this notebook

What I would have said, if she’d asked

A name gives you words. It doesn’t give you years. Please stop congratulating me on something that should have happened when I was six.

I don’t trust you, and I’d like you to understand what that looks like, because it’s not rudeness. I bring a binder to every visit. I write down what you say while you’re saying it. I bring the papers. I watch your face when I say “familial Mediterranean fever” to see if you know what it is. When you reassure me, I don’t hear comfort. I hear the start of a door closing. It took decades of being handled to teach me that, and one kind appointment won’t unteach it. Maybe a hundred will. I’m willing to find out, but it’s you who has to earn it now, not me.

This is what would have helped.

Read the whole chart, not just today’s visit. It was all there.

Treat ancestry as a probability, not a rule. My grandparents’ boat was never a lab test.

When you order a test, follow up on the result. Page two is part of the report.

When you don’t know, say “I don’t know. Let’s find out.” Silence is not neutral.

A symptom that comes back isn’t a personality. Neither is the woman describing it.

I kept the list for over twenty years. Tonight I added the last line and closed the notebook. At the bottom of the page, under everything else, I wrote the answer to the question at the top.

THINGS THAT WERE NOT ANXIETY: All of them.

The Evidence Behind the Entries

Stina’s diary is one life, but the pattern in it has been measured. This section follows the diary’s own order and sets each entry beside what the peer-reviewed literature says. The full references come after.

How long is “too long”?

Across rare diseases, the time from first medical contact to diagnosis has been measured again and again. A survey of 6,507 people living with 1,675 different rare diseases in 41 countries found an average of 4.7 years, and more than half were diagnosed more than six months after first seeing a professional (Faye et al., 2024). Spain’s national registry found a mean delay of just over six years (Benito-Lozano et al., 2022). An earlier industry-sponsored patient survey reported an average of 7.6 years in the United States, about eight physicians seen, and two to three misdiagnoses along the way (Shire, 2013). That report is not peer-reviewed and its sample was small, but its figures are widely quoted.

FMF is worse. In an international survey of 1,043 people with autoinflammatory diseases, half of whom had FMF, adults waited an average of 14 years for a diagnosis (Rech et al., 2024). In a European juvenile-rheumatism cohort of 960 FMF patients, one in five waited more than ten years (Bourguiba et al., 2024). Stina’s 48 years is far out in the tail of that distribution. It is not outside it.

“It’s anxiety”: Ages 6 to 20

Being told the problem is psychological is not an occasional misfortune in rare disease. It is close to a shared experience. A German Delphi study of rare-disease experts found that “a typical experience of individuals with a rare disease was stigmatization of having psychological or psychosomatic problems” (Blöß et al., 2017). In the autoinflammatory survey above, psychosomatic disorder was the single most common misdiagnosis (210 patients), ahead of irritable bowel syndrome (200) and fibromyalgia (140). 271 respondents said outright that they had been dismissed, and that the dismissal delayed their care (Rech et al., 2024).

Sociologists have described what that label does to a person. Nettleton (2006) interviewed patients living with “medically unexplained symptoms” and found that legitimacy was at the centre of it: “society does not readily grant permission to be ill in the absence of disease.” Stina’s decision at fifteen to stop telling people when things hurt is the behaviour that research predicts. Eventually the patient stops reporting what the clinicians have stopped believing.

Women wait longer: Ages 30 to 38

Being a woman is an independent predictor of diagnostic delay in rare disease. The odds rise by about 22% in the international survey (Faye et al., 2024) and about 25% in the Spanish registry (Benito-Lozano et al., 2022). The same holds in FMF. An Israeli study of patients whose diagnosis took more than ten years found significantly more women in the delayed group than among controls (Lidar et al., 2005). The juvenile-rheumatism cohort found women delayed more often than men, 56% versus 47%. Its authors suggest that FMF’s abdominal and pelvic attacks are mistaken for menstrual pain (Bourguiba et al., 2024).

That mechanism has a well-studied parallel. Endometriosis carries an average diagnostic delay of about 6.7 years, mostly in primary care (Nnoaham et al., 2011). A systematic review names “menstrual stigma and the normalization of menstrual pain” as a core barrier (Davenport et al., 2023). A review of 77 studies of chronic pain found gender bias built into both the clinical encounter and treatment decisions (Samulowitz et al., 2018). “Within the range of normal for some women” and “probably perimenopause” belong to this pattern.

“You don’t have the background”: 2018 to 2025

FMF is most common in people of Armenian, Turkish, Arab and Jewish ancestry. That is a statement about probability. In Stina’s tally it hardened into a rule. The literature shows what happens when it does.

In the United Kingdom, researchers identified 21 patients of Northern European descent with FMF, all descended from a shared founder dating to around 1460. Every one of them responded to colchicine. One in seven had already developed AA amyloidosis, and the authors wrote that this “may reflect delay in diagnosis associated with extreme rarity of FMF in this population” (Rowczenio et al., 2017). A later British family carried FMF through four generations; the father died at 52 after a kidney transplant, with amyloidosis found at post-mortem (Rowczenio et al., 2020). In Germany, the median diagnostic delay in 64 patients was eight years, a quarter had AA amyloidosis, and amyloidosis was significantly associated with later diagnosis (Ebrahimi-Fakhari et al., 2013). In Amsterdam, a third of FMF patients had had abdominal surgery before anyone named the disease (Hageman et al., 2019). That is Stina’s normal appendix, repeated across a clinic.

A 2026 case report of FMF in a patient of Northern European descent puts the lesson simply: FMF should be considered “regardless of ancestry” (Ammari et al., 2026). Worldwide, FMF is now recognised well beyond its classic populations (Ben-Chetrit & Touitou, 2009).

Page two: 2017

A test result that is ordered but never acted on is a recognised failure of the system, not a quirk of one office. A systematic review of 19 studies found that 6.8% to 62% of laboratory results in outpatient care were not followed up, and it noted “few guidelines regarding responsibility for patient notification and follow-up” (Callen et al., 2012). In a study of primary-care practices, patients were not informed of clinically significant abnormal results, or no one documented informing them, 7.1% of the time. The rate ran as high as 26% in some practices (Casalino et al., 2009).

Genetic results carry an extra risk. MEFV has an unusually high share of variants whose significance is unknown or disputed (Van Gijn et al., 2018), and early international quality checks of hereditary-fever testing found high genotyping error rates and clinical interpretation “scarcely provided” (Touitou et al., 2009). A variant labelled uncertain can still come with a classic FMF picture (Ulu et al., 2025). Whether labs and clinicians have a duty to go back to patients when understanding improves is still debated. Most authors call it “ethically desirable but practically unfeasible” (Otten et al., 2015). In the autoinflammatory survey, 92% of patients said genetic testing was available but only 69% had been tested, and patients’ access to full results and interpretation was “still suboptimal” (Rech et al., 2024).

What the delay does to the body: 2024

Untreated FMF is not only a series of bad weeks. The inflammation between attacks keeps the liver making serum amyloid A, and over years that protein can deposit as amyloid in the kidneys and other organs. “AA amyloidosis is the most severe complication and leading cause of death in untreated individuals” (GeneReviews; Deuitch et al., 2026). In the juvenile-rheumatism cohort, patients diagnosed more than ten years late had nearly four times the rate of amyloidosis: 10% against 2.6% (Bourguiba et al., 2024). “A little protein, recheck it sometime” is the moment the literature warns about.

What the delay does to a family: the year we stopped

In a Turkish cohort, infertility affected 14.6% of women with FMF. It was predicted by disease severity and by failure to respond to colchicine, and in five patients it reversed once IL-1–blocking treatment brought the inflammation under control (Atas et al., 2020). An Armenian study came to the same conclusion from the other side: infertility was “clearly associated with a more severe disease and a lack of adequate colchicine treatment,” while controlled FMF did not impair fertility (Sotskiy et al., 2021). A systematic review and meta-analysis prepared for the 2024 EULAR/PReS recommendations examined colchicine’s safety in fertility, pregnancy and breastfeeding, and supports continuing it (Otón et al., 2025; Ozen et al., 2025).

None of this can say whether any single couple would have conceived. That is exactly the grief Stina names. Women living with involuntary childlessness in midlife describe a loss that is “ambiguous and intangible,” and the researchers stress that “the loss of hope cannot be pathologised” (Fieldsend & Smith, 2020). Twenty years after unsuccessful fertility treatment, childlessness remained “a major life theme” for every woman studied, and it grew sharper as friends became grandparents (Wirtberg et al., 2007). In other chronic inflammatory diseases, most women who wanted children had fewer than they planned: 55% with rheumatoid arthritis and 64% with lupus (Clowse et al., 2012). The grocery-store conversation is what researchers call disenfranchised grief. It is a loss other people don’t recognise, so nobody sends a card.

What the delay does to the mind

In an Israeli population study of 7,670 people with FMF and as many matched controls, both depression and anxiety were significantly more common in FMF (Lidor et al., 2021). A smaller Turkish study found anxiety in 53% of FMF patients against 16% of controls (Deger et al., 2011). Delay itself adds to the burden. People whose rare disease took longer to diagnose needed psychological care more often while they searched, and a shorter delay was linked to less irritability and frustration (Benito-Lozano et al., 2023). An unmet need for psychological support was itself a predictor of longer delay (Faye et al., 2024).

Why a diagnosis is not always relief: September 2026

The dermatologist’s question assumes diagnosis is an ending. The research says it is often a second beginning, and not a gentle one. Bury (1982) described chronic illness as a “biographical disruption,” a break in the story people tell about who they are and where their life is going. A late diagnosis disrupts the biography backwards as well as forwards: the patient has to re-read the whole past in its light.

Studies of adults diagnosed late with other lifelong conditions describe the same arc Stina lives. In one, the stages ran “relief and elation,” then “confusion and emotional turmoil,” then anger, then “sadness and grief,” before any acceptance (Young et al., 2008). Women diagnosed with autism in middle age described “re-living life through a new lens” and an adjustment that was painful “at such a late stage” (Leedham et al., 2020). Most directly, a 2026 interview study of patients harmed by diagnostic delay found that nearly all had felt dismissed, “leading to frustration, anger, and self-doubt.” Diagnosis did bring validation, but the lasting effects were “mistrust in the healthcare system and reluctance to seek future care” (McCleskey et al., 2026).

For balance: not everyone diagnosed late responds with anger. In a small study of adults diagnosed with autism after fifty, most described the diagnosis as a positive step (Stagg & Belcher, 2019). Relief and anger can coexist, and which one leads depends heavily on what the delay cost.

Why she doesn’t trust you: the last entry

Philosophers call what happened to Stina epistemic injustice. Carel and Kidd (2014) argue that ill people are especially vulnerable to testimonial injustice, meaning their word counts for less “through the presumptive attribution of characteristics like cognitive unreliability and emotional instability that downgrade the credibility of their testimonies.” Blease, Carel and Geraghty (2017) show how a clinician’s doubt that an illness is “real” can itself delay diagnosis.

The damage to trust is measurable. In 184 patient accounts of diagnostic error, researchers identified 224 instances of unprofessional behaviour, including “ignoring patients’ knowledge” (Giardina et al., 2018). Among 696 patients and families harmed by medical error, most often a diagnostic one, the recurring themes were providers who failed to listen and a resulting “loss of patients’ trust in both the health system and providers,” with post-traumatic stress among the consequences (Southwick et al., 2015). Researchers studying patients with Ehlers-Danlos syndromes named the result clinician-associated traumatization: repeated negative encounters that lead patients “to lose trust in their healthcare providers and the healthcare system, and to develop acute anxiety about returning to clinic” (Halverson et al., 2023). Sebring (2021) argues that medical gaslighting “is not simply an interpersonal exchange” but grows out of assumptions built into health care, and that it falls hardest on women and other marginalised groups.

Stina’s binder, her notebook and her watchfulness when she says the name of her disease are not paranoia. They are what trust looks like after it has been spent.

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Working Notes for Amy

Remove this page before you publish or share the diary.

Where each detail came from

These details come from your own first-person author notes on the Evidence pages, or from your message about the dermatologist. Please check them anyway.

  • The skin in childhood, being ridiculed and isolated for it, and the guttate psoriasis and Sweet syndrome behind it (Skin evidence page)
  • Night leg pain (“growing pains”), hot shins after a school fitness test, and the bone scan at 38 blamed on perimenopause (Bones page)
  • Chest pain that hurt to breathe, called anxiety; pericarditis with a rub, called anxiety or reflux; pleurisy called a muscle strain (Heart, Lungs and Fevers pages)
  • The normal appendix removed at 16, and the pain that came back (Gut page; the course chart says about 24, and your Gut page says 16, so I used 16)
  • The “hypochondriac” label, and years of high markers stamped “stress” or “lab error” (Fevers and Blood Markers pages)
  • The car accident, the disc surgery and “your pain should be gone”, foot numbness on both sides (Spine and Nerves pages)
  • Trigeminal neuralgia, hearing loss, neurogenic bladder, and the white-matter spots on MRI (Autonomic & Senses and Brain pages)
  • Low vitamin D, wandering calcium, a flat cortisol curve and “perimenopause” (Hormones page)
  • Heavy bleeding, years of trying to conceive, and “just bad luck, or stress” (Reproductive Health page)
  • “A little protein, recheck it sometime” (Kidneys page)
  • Jobs and friendships lost; a 48-year delay (Skin page)
  • Your mother, who stopped believing anyone would look (Brain page memorial)
  • The 2017 genetic test left unaddressed; about six providers dismissing FMF over heritage or unfamiliarity; resentment and anger at the dermatologist; the lost chance to have children (your message)

What I invented, so please correct it

  • The 2017 entry is where I had the least to go on. I wrote it as a portal result that nobody called about, with a nurse saying “nothing actionable.” Please rewrite it with what really happened.
  • The six quotes in “The tally.” You told me the reasons (heritage, or they knew nothing about it). The exact words are mine.
  • “The seventh doctor ordered the panel,” plus “two changes in MEFV” (taken from your Immunity page) and the “must be such a relief” phone call.
  • Invented texture: Jenny P., Mr. K., Laura, the job loss at 26, “month fourteen,” the parking garage, the grocery-store conversation, the notebook list and its title.
  • Ages and years: 6, 9, 11, 15, 20, 26, 30, 33, 38, “early forties,” 2024, and the order of your mother’s death. These are placeholders set to fit a roughly 48-year delay.
  • Your partner is never named, and I used no pronouns for them. Add a name if you want one.
  • Stina’s job. She teaches biology. That makes her closer to you than the course’s graduate-student Stina.

Before you publish

  • The course conflict. Course Stina is 26, of Swedish descent, and diagnosed at about 25. This Stina is diagnosed in her fifties. If both appear on bettybroadbent.com, students will meet two timelines. A one-line framing note on the course version would handle it.
  • The composite question. The patient chart calls Stina a composite. The evidence pages say “Stina is me.” The note before the entries avoids choosing, so the choice is yours.
  • Ancestry in the diagnostic criteria. I believe the Tel-Hashomer criteria (Livneh et al., 1997) list “appropriate ethnic origin” as a supportive feature. That would make a strong line for the ancestry section, but I couldn’t confirm it against the full text, so I left it out. If your library copy confirms it, add it.
  • Grey literature. The Shire (2013) figures come from an industry report and are labeled that way in the text.
  • Verification. Every other reference was checked against its PubMed record (authors, title, journal, year, volume, pages, DOI, PMID). Quotations come from abstracts or full texts that were read.

List of terms