introduction: health + writing

Jul 25

Since starting to experience significant health challenges at the turn of 2017 (after a Rookie season of illness several years prior), I have often felt I straddle two worlds. Two worlds that are a bridge too far - and need not be.

If you are here, thanks for spending some time hanging out on that bridge.

When you first start to experience a period of sickness, it’s a bit like you “Alice-in-Wonderland-it” straight down the rabbit hole, and land somewhere else. The shape of your life starts to stand out; all the “regular people” who are your nearest and dearest become confused and (kindly) concerned as to what happened, or where you fell.

But eventually…you start to notice where you have landed. You have fallen into this underworld of other 20, 30, 40 somethings (mostly female, mostly with undiagnosed immune diseases) who are struggling with their health. You’ve crossed into, as one recent author titled it - “The Invisible Kingdom” - and discovered an underground army, a sea of others also living in some very rocky waters. Some in the shallower end, some in the deeper end, some in need of a SEAL-team rescue mission, and many that will eb and flow in between. But all in a vaguely similar ocean.

The shape of their life may look a number of ways.

At their worst, they can socialize for twenty minutes and pay the price after. They are rotating between trying to find any rest or comfort and battling whatever their body has thrown them that hour. They are pill-filling and insurance fighting, trying to figure out the most suitable answer to the question “How Are You?”, all while fighting to survive the single minute ahead and daydreaming of an escape hatch. Trembling through harsh flares, riding out take-downs, living in a 24/7 terrifying tumble-dryer of sickness, with a degree of physical intensity that can be - in a single honest word - unimaginable.

From their better angle, they may be toward the brighter end, mastering the balancing act of living. Designing the fullest life possible complete with much more of the Good Stuff- social lives, work, maybe even a dash of adventure. While likely also making many behind-the-scenes calculations a bit like a scrappy, closeted gambler: borrowing and stealing from the corners of life to back their reserves, roll with unpredictability, and maintain whatever lifestyle and treatment plan is keeping them in the more well-lived, managed, swimmable waters. Disguised in street clothes and the poker face that the invisibility of their condition automatically bestows.

And they are all, in their own way, re-imagining many rules of engagement; learning to bet the chips in a Pay-to-Play lifestyle; caught in a love triangle of uncertainty, heartbreak, and acceptance; and embodying - in any way possible - the notion that any health condition is something they have, not something they are.

It is a Club. And while it’s a Club with enormous variation - in diagnosis, severity, and experiences (I have literally been in a support group in which one member joined from a 12 hour work shift, another from an extended hospital stay) - it is a distinctive Club nonetheless. One with which your OG crew may be unfamiliar, but you are very well acquainted.

I have spent a long time in that club. And felt it was time for an introduction.

While this layout became apparent to me a few years in, I cannot take credit for its formalization.

That credit belongs to the many brave individuals who made their conditions visible enough for me to see. And specifically, to two chief members of The Club: Sarah Ramey and Meghan O’Rourke, who both made a map of this world in their books, and provided more common language for discussion.

There are a handful of differences between me and these authors. Between the diseases we have, and the particular hurdles in the health journeys we have faced.

But there are also (as both authors emphasize) significant threads common to this related group of health problems, and to our own extreme experiences which - while certainly not mainstream - are far less rare than one would hope.

More to the most relevant and immediate point, they have supplied this underworld with more vocabulary and a breadth of language for discussion.

While patients with chronic conditions are most commonly referred to as "Spoonies" (based on the famous "Spoon Theory" developed to describe rationing energy while living with lupus), Ramey went so far as to suggest another name for The Club’s participants, which for the sake of quoting, we will use here. A word she made up:

WOMI. “Woman of Mysterious Illness”. [Or MOMI, man of mysterious illness /POMI, person of mysterious illness]

A brief interruption for a note on the word “Mysterious”:

As a disease class, the immune-mediated illnesses - including all the autoimmune diseases, autoinflammatory diseases, post-viral or post-infectious immune illnesses (Lyme, Long-Covid etc) - this entire related family- are not the best medically understood group of the bunch.

Even the Oscar Winners of autoimmune diseases with the red carpet fame lack singular causes and curative treatments.

This cluster also has a knack for starting with one physiological pattern, and spreading widely in its reach. Yielding a wide range of symptoms, that in our overly siloed medical system, can fall through the cracks as “mysterious”.

As Harvard Health printed recently:

“The autoimmune diseases are a mysterious set of conditions that vary in severity from the merely annoying to life-threatening…while effective therapies are available for most of these conditions, cures are not. The immune system is exceedingly complex and decades of research have illuminated some of the ways it goes awry... But, for most autoimmune illnesses..the true cause is unknown.

The most common (and quite general) theory is that a person with a particular genetic background that makes them prone to immune system 'misfiring' encounters an environmental trigger..and that sets off autoimmune disease. For the most part, we don't know the trigger or toxin and in a particular population (or family or even among identical twins) we don't know why some people develop these conditions and others don't…in fact, certain autoimmune diseases may turn out be due to an infection or allergic reaction and the immune abnormalities are just a reaction.”

Not exactly a dot for every i and a cross for every t.

Now. Back to the task at hand: Our vocab. Our WOMIs. Our introductions.

Without further ado, and with a lot of help from Sarah:

World: Meet the WOMIs

“First of all, as noted, no two WOMIs are the same… you could be a WOMI 1 or a WOMI 5, which are profoundly different experiences.

You could have rheumatoid arthritis, or lupus, or Crohn’s, or celiac, or multiple sclerosis, or Hashimoto’s, or Raynaud’s, or Sjögren’s, or Type 2 diabetes—all related, but all quite different. You could have… Epstein-Barr or Lyme, mast cell activation syndrome or fibromyalgia. You could have a problem with yeast, or bad bacteria, or parasites, or viruses, or mold. You could have a problem with mercury, or lead, or aluminum, or cadmium, or antimony, or chromium, or iron. You could have a deficiency in vitamin A, or B1, or B2, or B3, or B5, or B6, or B12, or C, or D, or E, or K.

You could have one of these things.
You could have many of these things.
You could have most of these things and more, you unlucky minx.

The WOMI Continuum is real, and we mysteriously ill really do contain multitudes.”

WOMIs: Meet the World

As mentioned by both authors and known by many, one of the biggest deficiencies faced by many in The Kingdom is one of the most important nutrients:

Other People.

The isolation of illness cuts across 1000 planes.
Even those well enough to be social butterflies often feel separate behind their wings.

What better way to medicate this than with a shared space, a Mixer.

As for me. Now that we are all acquainted with the WOMI waters, I will turn to my specific patch of the deeper seas.

In truth, the physicality of my experience has been beyond my wildest imagination; and the scale, where I lose finesse with words.

My own experience has been lengthy and intricate, including significant diagnostic delays, and - in the interim - multiple years of accumulated insults and missteps that left me swimming much more against the current than with it.

The main elements in my particular WOMI ocean include:

Sjögren's Syndrome, a systemic autoimmune disease that can affect the entire body, including, in my case, many different parts of the nervous system, vascular system, glands, and skin.

Mast Cell Activation Disorder, a condition of immune cells that unleash mediators in a wide variety of organs and tissues, including the neurological, GI, and lymphatic systems; also responsible for anaphylaxis episodes, allergic responses, and accelerated autoimmunity.

And a five-peat series of infections, concussion, and extensive medication challenges that all gave the wrong side momentum, ultimately revealing an advancement of both underlying conditions.

Once correctly diagnosed in 2020/2021, the disease activity of both was fairly severe, and progression continued to largely outpace the trial and error of treatment until the turn of 2022.

As one autoimmune researcher suggests, "successive hits" to the immune system can toggle the misfire switch to a stubborn new set point. This can result in interrelated disruptions, runaway disease progression, and more time kicking hard out of the deep end.

I am forever grateful to the others who, in their own sharing, have not only tossed me major metaphorical floaties, but also given me much broader context for my experience.

The writing shared on this site/social media will include both specific windows into my personal experience of illness, as well as broader reflections on the ingredients of healing I have found most potent in enduring it. (with some general work, poetry, or possible haiku attempts likely tossed in for good measure).

While I know these outlets will be beneficial for me, I hope something comes of it for others- be you healthy or WOMI; a Muggle or a Spoonie.

All my best,
Emily