Deep Dive: The Rise of Autoimmunity in the West

Why does it seem like more and more people have some autoimmune-y fatigue thing, or skin thing, or gut thing? Because they do.

Readers, hello! A quick head’s up - I’m taking the next two weeks off. During that time, catch the newest piece from the Lady’s Illness Library, a collection of stories about unconventional illness journeys.

Art by Dan Segal

In February of 2019, four years into running my startup, I came home one evening and immediately put on my sweatpants, as always. Thank God, the day was over. Within thirty minutes, I noticed that my thighs and butt were itching, and the itch quickly took over my lower extremities. When I pulled down my sweats, I found that my butt and thighs were covered in small bumps, criss-crossed with red lines where I had dug in my fingernails trying to relieve the increasingly intense itch. The rash was shocking for its size, the sheer square inches it managed to cover, and so quickly. I hadn’t had many allergic reactions in my life, but this must be one. I showed it to my fiancé and he agreed it was weird but also “probably fine,” his general life philosophy. And within an hour, the bumps had faded. It seemed like some fluke thing. It was probably fine.

The next evening I came home and put on my sweatpants. Thirty minutes later, there was the rash: huge, red, and itching and burning like a swarm of fire ants and a poison oak bush had combined forces to invade my lower half. Two nights later, the same thing happened, and again three nights later, and after a week of consistent rashes, I messaged my doctor and also began a mental inventory of any changes in my life: had I eaten anything new? Not that I could think of. Had I used a new skin care product? No. Was I allergic to my beloved sweatpants? I switched them. No change. 

This was not the first weird body thing that had happened to me recently. In the previous six months, I had started having recurring sinus pain and colds, which seemed to emerge every two weeks or so. I was regularly waking up exhausted even after getting ten or eleven hours of sleep. I had noticed minor, periodic heart palpitations, where it felt like my heart was skipping a beat every so often. I had developed chronic diarrhea, pooping liquid six to ten times a day. Each of these symptoms was not debilitating on its own, and each individual thing was possible to explain away: it’s cold season; maybe I was lactose intolerant; hearts just do that sometimes; who isn’t tired these days? Looking back, it all seems highly concerning, but as I made the rounds to various specialists to investigate my ailments, the general theme was “it’s probably fine.” When I went to see a dermatologist about the rashes, she told me matter of factly within the first four minutes,

“We call this urticaria.”

“Ok,” I said, “and what causes it?”

“There is no clear cause,” she said, “it just happens for some people.” She shrugged. “You can try an antihistamine to help control it.”

I went home and Googled “urticaria,” and I realized that it’s the fancy word for “hives.” It refers to, basically, rashes caused by allergic reactions. The formal-sounding name provides no real specificity and no clarity on the cause, and as I stared at my Google trying to understand WFT the doctor had told me, I had a flare of anger that she would assign such an official, specific, intimidating word to something so vague, masking the genuine lack of any real understanding (hers, mine, and everyone’s). 

But there was apparently nothing to do other than take Claritin, which I wasn’t so inclined to start doing given the doctor’s general lack of conviction about that solution. So I carried on, diarrhea and fatigue and rashes and heart palpitations and sinus colds all coming and going randomly, never adhering to a pattern, never getting quite bad enough to prompt a major life change. It was all just barely manageable, and no one had answers, so there wasn’t really anything to do. It wasn’t until five years later, as I was trying to conceive my second child, that I was diagnosed with an autoimmune disease. In retrospect, the signs were clear. 

What is autoimmunity?

An autoimmune disease is one where the immune system, using the mechanics designed to fend off disease and infection, instead attacks the body’s own cells, tissues and organs. Usually people describe this using war analogies: an army that gets confused and starts shooting its own. (Increasingly, though, there is a movement away from the many military metaphors, tending towards, perhaps, an image of a disrupted ecosystem.) Some of the most common autoimmune diseases include type 1 diabetes, multiple sclerosis, rheumatoid arthritis, and Hashimoto’s (thyroid autoimmunity), which was my eventual diagnosis. The causes of autoimmunity are often mysterious or only partially understood, and even the category itself has fuzzy boundaries. Some sources say there are over eighty autoimmune diseases, others cite over one hundred. Certain poorly understood diseases spark intense debate, like Post Treatment Lyme—the Autoimmune Association disease database classifies it as an autoimmune disease, while other experts are adamant that it actually doesn’t even exist. All of this vagueness and disagreement among experts makes it a particularly slippery area to understand as a patient.

Another characteristic of autoimmunity, which can make it difficult to diagnose, is the wide variety of symptoms that can be associated with many autoimmune diseases, and the variability in symptoms between patients. The mechanisms behind certain autoimmune diseases are better understood, like in the case of multiple sclerosis, where the immune system attacks myelin, a fatty substance that surrounds and protects nerves in the spine and brain. But most autoimmune diseases come with a range of symptoms all over the body, and these can vary greatly in type and severity between people. In the case of thyroid autoimmunity, for example, which affects 5-15% of women and 1-5% of men, the symptoms read like a list of the ailments of aging and modern life: fatigue, weight gain, joint and muscle pain, constipation, dry skin or dry, thinning hair. Oh yeah: also bouts of hives, chronic inflammation of the nasal cavity (rhinosinusitis), and heart palpitations. 

My diagnosis story

When I go into my MyChart, the online portal that houses my medical information, I can schedule an appointment with any of the doctors I have seen in the UCSF health system. This list currently has twenty-three doctors, the track record of my effort to figure out what the heck was going on with me. I saw a dermatologist and an allergist for the rashes, an ENT (ear, nose and throat) doctor for the sinus colds, a sleep specialist for the fatigue, a gastroenterologist for the diarrhea. My MyChart list does not show the multiple acupuncturists, the integrative specialists, the massage therapists, and everyone else who I consulted in various states of desperation through the years.

When my diagnosis finally came in 2022, it did so in the most sneaky, unexpected way. I was preparing to start IVF for my second child, and during a routine set of testing, my thyroid result came back extraordinarily out of range—fifteen times higher than normal. The result was so abnormal that the fertility doctor had me re-test, thinking it was a lab error. When the second result came back high again, I was swiftly diagnosed with Hashimoto’s and instructed to take levothyroxine, a drug to replace the thyroid hormones that my body is no longer making. That was it, I was told. My thyroid hormones would be closely monitored during pregnancy, and beyond that, each year, my thyroid function be retested and the level of replacement hormone adjusted. There is nothing else to do, the endocrinologist repeatedly told me.

But, fatefully, I am not someone who likes being told “you can’t do anything about it.” This is a blessing and a curse, as we will see. Perhaps I already suspected something autoimmune-y somewhere in my subconscious, because before my diagnosis I had already gravitated towards a couple books about weird, undiagnosed, autoimmune-y things, the main one being The Lady’s Handbook for her Mysterious Illness. So now, with a diagnosis in hand, I began a process of trying to understand what the hell was going on with my body, with the help of the internet, various Functional Medicine doctors, and ultimately Dr. Datis Kharrazian’s online Hashimoto’s resources, which blew my mind and basically taught me everything I know about my disease. 

And by the time I had learned all about Hashimoto’s I couldn’t help but think: this autoimmunity stuff is wild, why isn’t everyone talking about it?

The autoimmunity “epidemic”