Book Review: Invisible

invisibleInvisible: How Young Women With Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine
by Michele Lent Hirsch
Nonfiction – Health
230 pages
Published February 2018

I’ve been reading a lot of fiction lately, so it’s about time to sprinkle in a nonfiction volume! As soon as I learned this book existed, I knew I needed to get my hands on it. I’ve been living with two autoimmune disease most of my adult life, and in the past three or four years their impact on my life has grown quite a lot. I struggle with fatigue, with my weight, with muscle pain, with migraines, with intestinal issues if I eat the wrong thing. Some days it’s just hard to function like a normal person when my brain is full of fog and every movement hurts. So this book? This is my life.

The author of this book did a LOT of research. She’s not only disabled herself, but she interviewed SO MANY PEOPLE, with all kinds of different disabilities, diseases, and experiences. Mostly patients, but she also interviewed a few doctors.

The book is divided into six chapters: “Could Someone Love This Body of Mine,” “The (Foggy) Glass Ceiling and the Wall,” “It’s Cool Guys I’m Totally Fine,” “Why Don’t They Believe Me? or the Case of the Lady Lab Rat,” “To Raise Small Humans – Or Not,” and “Sick Like Miss America.” I really enjoyed her divisions here. The first chapter is about romantic relationships, the second about work, the third about friendships. “Why Don’t They Believe Me” covers women’s relationships with their doctors, the next chapter is obviously about fertility and parenting, and the last chapter is about society’s expectations of beauty and how to be sick.

“Could Someone Love This Body of Mine” touched on some of my personal insecurities, as one of my autoimmune diseases leaves pretty ugly scar tissue on my skin. It talks about how men tend to leave women with disabilities or chronic illness, but women don’t. (The book has extensive footnotes detailing sources and studies to back up claims like this one.)

I think the only chapter in this book that I didn’t really directly relate to was about raising children. I was child-free before being diagnosed, and it hasn’t changed my mind. We don’t want kids.

If you or someone you know has a chronic illness, I’d recommend reading this book. There’s valuable information and insight here, even if all you get out of it is “I’m not alone in this!”

Now I’m off to take a nap.

From the cover of Invisible:

Though young women with serious illness tend to be seen as outliers, young female patients are in fact the primary demographic for many illnesses. They are also one of the most ignored groups in our medical system—a system where young women, especially women of color and trans women, are invisible.

Michele Lent Hirsch knew she couldn’t be the only woman who’s faced serious health issues at a young age, as well as the resulting effects on her career, her relationships, and her sense of self. What she found while researching Invisible was a surprisingly large and overlooked population with important stories to tell. Miriam’s doctor didn’t believe she had breast cancer; she did. Sophie navigates being the only black scientist in her lab while studying the very disease, HIV, that she hides from her coworkers. For Victoria, coming out as a transgender woman was less difficult than coming out as bipolar. 

And because of expectations about gender and age, young women with health issues must often deal with bias in their careers and personal lives. Not only do they feel pressured to seem perfect and youthful, they also find themselves amid labyrinthine obstacles in a culture that has one narrow idea of womanhood.

Lent Hirsch weaves her own harrowing experiences together with stories from other women, perspectives from sociologists on structural inequality, and insights from neuroscientists on misogyny in health research. She shows how health issues and disabilities amplify what women in general already confront: warped beauty standards, workplace sexism, worries about romantic partners, and mistrust of their own bodies. By shining a light on this hidden demographic, Lent Hirsch explores the challenges that all women face.

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Library Loot Wednesday!

invisibleThe book I’m most excited about getting this week is Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine, by Michele Lent Hirsch. I have two autoimmune diseases (plus migraines) myself, so this book seems to be written FOR ME. I was diagnosed with Hashimoto’s Thyroiditis in my late twenties, and this books speaks straight to my experiences.

love hate and other filtersI also picked up Love, Hate, and other Filters, which made a big splash a while back but I just haven’t gotten to until now. Figured since it’s Ramadan, I should fit in a Muslim-centered book along with all my Pride reading. The review will be up later today, since I’ve read it already!

persepolis 1On the topic of Muslim-centered books, I checked out the first volume of Persepolis, a graphic novel about a girl growing up in Iran. The second volume is requested but hasn’t come in yet.

Dread Nation finally made its way to me, there was a long wait list. I was really excited about this book before it came out, but the author is apparently a little ignorant of Native American issues, calling the schools where they indoctrinated Native children “well meaning” instead of racist. A Twitter thread about Dread Nation. So I’m a little wary of it now.

The last library book I got this week is Well, That Escalated Quickly – Memoirs and Mistakes of an Accidental Activist, by Franchesca Ramsey. Ramsey is a Youtuber who apparently went unexpectedly viral and decided to use her platform for activism. It looks funny.

In related news, BOOK MAIL! 

I got my Book of the Month package early last week, which contained The Book of Essie (excellent and already reviewed), When Katie Met Cassidy (excellent, review coming next week), and The Kiss Quotient. (Haven’t read yet.) I also received some Goodreads Giveaways – Prisoner 155 – Simon Radowitzky, an unexpectedly large graphic novel, and How I Resist: Activism and Hope for the Next Generation. That last one I won all the way back in March, and was really excited to get the ARC, but they had some printing problem with the ARCs, and then it was backordered from so many pre-orders, so I actually didn’t get it until the second printing, AFTER it released! A little disappointing, but I’m glad to finally have it.

Book Review: The Journal of Best Practices

journalThe Journal of Best Practices: A Memoir of Marriage, Asperger Syndrome, and One Man’s Quest to Be a Better Husband
by David Finch
Memoir
222 pages
Published 2012

Well. I’m still not 100% back to health, but I’m well enough to get absorbed in a book again! This book was especially interesting to me because we are pretty sure that my husband is on the autism spectrum. What would have been called Asperger’s a few years ago, before they wrapped that back into autism, because it’s all the same syndrome – it just differs in how it impacts people. (The book was obviously written before that happened, though Asperger’s still seems to be shorthand for autistic people that don’t fit what most people think of as autistic – what some people would call high-functioning, I suppose, though that’s also not as cut and dried as it seems. Rebecca Burgess described it well in her comic on Tumblr.)

I read portions of this book aloud to my husband, because they described him to a T. The very first page mentions how Finch recalls his niece’s birthday, not because he’s a good uncle, but because it’s 3/14 – Pi. My husband remembers my birthday because it’s half a stick of RAM (well it used to be, anyway!) – 5/12. Now he remembers it as 2^9. The first chapter then goes on to describe how Finch’s wife sat him down with a self-diagnostic questionnaire (he received an official diagnosis later) and he was surprised at how many questions described him. While they didn’t list all 200 or so questions in the book, the ones that were mentioned I asked my husband. He was a Yes to all but one, and looked at me afterwards with a laugh and a joking “I’m feeling a little attacked right now!” That included questions like “Do you sometimes have an urge to jump over things?” (Yes) and “Have you been fascinated by making traps?” Husband told me about a book on survival he’d been given when he was 14 or so – he doesn’t remember much of it, but he can recall almost verbatim the chapter on traps and snares.

The book was a fascinating look into the mind of an adult with autism trying (and succeeding!) to navigate a relationship. It gave us a lot to talk about, and a few new strategies to try. If you know or love anyone on the autism spectrum, I highly recommend this book. It might help you understand how they see things.

I have another book on autism to read soon – Been There, Done That, Try This! – about coping strategies for autistic adults. I’m eager to see how much of that we can use in our daily lives.

From the cover of The Journal of Best Practices:

At some point in nearly every marriage, a wife finds herself asking, What the @#!% is wrong with my husband?! In David Finch’s case, this turns out to be an apt question. Five years after he married Kristen, the love of his life, they learn that he has Asperger syndrome. The diagnosis explains David’s ever-growing list of quirks and compulsions, his lifelong propensity to quack and otherwise melt down in social exchanges, and his clinical-strength inflexibility. But it doesn’t make him any easier to live with.

Determined to change, David sets out to understand Asperger syndrome and learn to be a better husband – no easy task for a guy whose inability to express himself rivals his two-year-old daughter’s, who thinks his responsibility for laundry extends no further than throwing things in (or at) the hamper, and whose autism-spectrum condition makes seeing his wife’s point of view a near impossibility.

Nevertheless, David devotes himself to improving his marriage with an endearing yet hilarious zeal that involves excessive note-taking, performance reviews, and most of all, the Journal of Best Practices: a collection of hundreds of maxims and hard-won epiphanies that result from self-reflection both comic and painful. They include “Don’t change the radio station when she’s singing along,” “Apologies do not count when you shout them,” and “Be her friend, first and always.” Guided by the Journal of Best Practices, David transforms himself over the course of two years from the world’s most trying husband to the husband who tries the hardest, the husband he’d always meant to be.

I’m on the Mend!

I am finally on the mend. It’s a long slog back to what passes for healthy for me, though. Staying awake long enough to read anything has been a challenge, and books are coming due at the library before I’ve even been able to start them. I’m particularly sad about Naomi Klein’s No Is Not Enough – it’s due today, someone else has a hold on it, and I’ve only managed to read the first 20 or so pages. Enough to know I REALLY want to read the entire thing. I am trying to resist the temptation to buy my own copy.

IMG_20171011_180750.jpgI received my copy of Femme Magnifique in the mail this week! FM is a feminist graphic novel made through Kickstarter – the tagline is “A comic book anthology salute to 50 magnificent women who take names, crack ceilings and change the game in pop, politics, art & science.” There are 50 different comics, by different artists, about pioneering women. It’s a fantastic book, and I will take some pictures and put up a full review as soon as I can. My copy, unfortunately, arrived with some damage to the spine, but the group behind it had already sent out an e-mail saying their shipper had used the wrong packaging for the first wave of books, and to contact them if your book arrived damaged. So I’ve done that, and they’re figuring out how to replace copies.

I finally got around to reading Six of Crows as I was getting sick, before I got truly ill. It was fantastic, and I have the sequel, Crooked Kingdom, which I’ll be reading very soon. I’ll put up a joint review of the two books when I’m done.

I also bought a novel, because my library doesn’t have it, about a couple opening up their relationship. Next Year, For Sure is by a Canadian author, as well, so that’s another for my Read Canadian Challenge.

I’m hoping to get back to two reviews a week as soon as I finish kicking this lung/ear/throat crap to the curb. I miss blogging, and more than that, I miss reading!

Oh boy, Tonsillitis.

Might be taking a week or two hiatus from blogging as I recover from being pretty ill. I’ve mentioned in the past that I have some chronic illnesses, but I have been pretty steadily gaining new readers here and there, so I’ll update.

My main issues are migraines and Hashimoto’s Thyroiditis. Hashimoto’s is an autoimmune disease where the immune system gets confused and attacks the thyroid gland. This eventually destroys enough of the thyroid gland that it can’t produce enough thyroid hormone, and a supplement needs to be taken. That’s where I’m at now – I have a daily thyroid pill. On occasion, usually when I’m sick with something else, my immune system will flare up and attack my thyroid again, causing it to swell up, get inflamed, and deteriorate further.

So my chronic cough, that I’ve had for a couple of years now (Bronchitis a few years ago plus my migraine maintenance med has a side effect of chronic cough) turned into Tonsillitis and an ear infection this week. Which triggered the Hashimoto’s. So after an urgent care visit Thursday night, I’m on an antibiotic, a steroid/anti-inflammatory, and some prescription cough syrup with a pain med in it. My voice is almost entirely gone (I typed up my symptoms and history to hand to all my doctors at the Urgent Care instead of having to talk so much!), I’m still coughing though not NEARLY as bad as I was Thursday, and I’m having trouble staying awake. (All three meds cause drowsiness, yay!)

All three meds also have a side effect of headache, which is not playing well with my predilection towards migraines anyway. So as you can imagine, the last several days have not been the most fun.

I did manage to finish American War by Omar El Akkad (an Egyptian-Canadian author, so it qualifies for my Read Canadian challenge), and I have a LOT to say about it. It’ll be getting a review soon, but for now I’ll just say it’s one of my favorites of 2017. I also have No is Not Enough: Resisting Trump’s Shock Politics and Winning the World We Need, which is on the National Book Foundation’s longlist for their Nonfiction award this year. The same author has written a few other anti-capitalism books (Shock Doctrine, No Logo, This Changes Everything: Capitalism vs the Climate) so if I like her style in No is Not Enough, I might have to pick up some of her other work.

I tried reading Demon Hunting in Dixie, because I won book 6 through Goodreads, and wanted to start from the beginning of the series. I almost threw it across the room less than a hundred pages in, but that reason deserves its own post.

I have several other books from the library I’m still trying to work on – Dark Money, Hitlerland (which is really interesting, I just keep getting distracted), The Tigress of Forli, and The Daughter of Sherlock Holmes, among others.

I’m really sad because I had planned to go to the Baltimore Book Festival today – I’d been looking forward to it for months – and now I’m too sick to leave the house. Especially when it’s so hot outside, which I don’t deal with very well even when I’m not actively sick. So that’s REALLY disappointing.

#90sinJuly – July 4 – No Rain

“And I don’t understand why I sleep all day
And I start to complain that there’s no rain
And all I can do is read a book to stay awake
And it rips my life away but it’s a great escape
Escape, escape, escape”

Oooo I identify with this. I’m hypothyroid, and despite being medicated, I still have bad fatigue days sometimes. Sometimes that means I can’t pull myself out of bed to go do things I’d planned to do. I tend to write and schedule a bunch of blog posts on my good days, so even if I have a bad fatigue day, something still posts on the blog here. So this is my book today – it’s taught me a lot about my condition and what I can do to mitigate it.20170626_134908