Just started Lady's Handbook For Her Mysterious Illness (literally, 2%) and I already have chills because of how familiar the invalidating diagnostic saga is & also searing rage because stories like this (white cis woman, physician parents) are the best case scenario.

Finished chapter 1.

So far extremely spot on to a lot of my experience (& many stories I've heard), and I'm also acutely aware that this matches me so much because I'm a white cis woman who grew up w/ the privilege of expecting to be seen as a reliable narrator of my experience.

This isn't a critique yet because I'm one chapter in, but this is a thing a lot of WW don't seem to see (I certainly didn't for a long time).

The terrible thing isn't that we're believed until we get sick. The terrible thing is how many people are never believed to begin with.

Ch 2 includes the "what if it's all autoimmunity?!" epiphany which feels like a lifetime ago for me personally now that I see so many more "what is it's all MCAS?!" conversations.

A weird feeling that I've absolutely never had before is appreciating a book while there is a gnawing feeling in my brain that this isn't the book I'd write about the topic.

Normally with informative memoirs (?) I'm just like "huh, cool" and this time I'm like "more more more!"

(I had an ill-advised afternoon coffee and I've been thinking about this book all day so here's more thoughts.)

I think one thing that's important to acknowledge is that already (1.5 chapters in), a lot of my reaction to this book is not about choices the author has made.

There are so few remotely honest books published about chronic illness that I hope every new title will make a significant contribution to the space.

And right now, for a number of reasons that are probably obvious, this space is mostly full of affluent white women.

So on the one hand, I can read this and think about how much it might (or might not) have helped me personally, as someone smack in the middle of the intended audience who really struggled to find stories about what I was going through.

But now that I know a lot more about the relatively few stories that are out there, I'm also reading it and thinking about who exactly will feel seen by this book and who is still left out of the story.

It would be different if there were shelves & shelves of diverse CI books.

And once again, I have barely read the book rn so I get that there might be some glaring stuff coming up.

But even if there isn't, somebody tell the publishing industry that we need more and better representation for chronic illness & its many intersections.

Okay and one more thing: cis women we really need to look at the way we talk about illness and gender for so many different reasons.

A lot of health/wellness writing* treats a certain type of white womanhood as neutral & uniquely impacted by bias.

*among other things

Back to reading.

CI cringe moment in ch 2 when Lyme Disease is used as an example of an illness that has greatly benefited from improved testing (& is usually screened for early by PCPs).

This is not an accurate or helpful characterization of Lyme. https://www.theatlantic.com/magazine/archive/2019/09/life-with-lyme/594736/

Alright and then the heart of the issue: the brief introductory description of medical bias only talks about women. No mention of race, no mention of trans and non-binary folks, and those aren't the only types of bias missing.

Something Maya Dusenbery talks about at the beginning of Doing Harm is how sex/gender data can be confounding because we can't always distinguish between social & biological risk factors so we can't always tell if risk is elevated due to assigned sex or due to gender.

I relate a lot to this writer too, because her story: I got sick and then I started talking about my health mystery and I realized there were a lot of people silently enduring the same thing so I started seeking out their stories... is also my story?

And chapter 2 ends with the reason she wrote this book: she wants every other mysteriously sick person to know that they aren't crazy* and they aren't alone.

I really want everyone else to know this too! This is one of very few books I've seen with this message.

* "not crazy" as reassurance in the context of chronic illness is extremely fraught.

I think people usually mean "you aren't imagining your symptoms" and they use that language specifically because of how non-psych chronic illness often gets harmfully misattributed to psych.

But of course the problem is much bigger than that because the term is weaponized in many different ways against different demographics.

My neuro told me I wasn't crazy after my 1st appointment & it felt validating, but it also just redraws the lines around who deserves support.

And to backtrack, the author mentions that she had 3 doctor parents (1 step) and I find this so interesting because my own weird bias/privilege(?) is that I grew up with 3 therapist parents. (2 psychologists & a social worker.)

This has totally shaped how docs talk to me.

Okay another weird/blatant omission in the book so far is that Chronic Fatigue Syndrome has been mentioned at least twice without any mention of ME?

This is another one of those fraught things, but uncritically using CFS after having interviewed so many people feels hinky.

Yeah this is definitely a trend as there have been a couple more pages mentioning CFS.

This isn't really a soapbox of mine, but if you're intending to map out chronic illness (not a term she really uses) then I think it's weird to know to say "post-treatment lyme" but not ME.

Another random aside: she has an experience where fluconazole (antifungal) ends a major flare and I just want to say that I have also had that experience but I don't see people talk about it very much so I don't know how common it is?

A really important thing this book is saying is that access to healthcare is not the same as access to QOL improvements, and because so much of chronic illness is still poorly understood, a lot of doctors are recommending things that will not help and may cause irreparable harm.

(can you tell I was an editor & storytelling workshop facilitator in my old life? )

So far the tone of the alt med section is pretty good (w/o really discussing cost).

It reminds me a lot of the descriptions of alt med in All In My Head (a memoir about chronic daily headache), which has a lot of the same strengths and weaknesses as this book, IIRC.