Patients for a Moment: What’s your favorite book about illness?

Friday, March 21 2014

For this month’s Patients for a Moment, I asked: “What’s your favorite book about illness?” I didn’t get many responses. In fact, I only got one real answer.

Barbara Kivowitz at In Sickness As In Health wrote that her favorite book about illness is Susan Sontag’s Illness as Metaphor. This is indeed an excellent book, a classic that every patient should read.

If I had to guess, I would say the reason I got so few responses is that there aren’t many books about illness — meaning chronic illness — and there are still fewer good books about illness. The experience of chronic illness is not well understood by literature, or even culture more broadly. Can you think of a fictional character whose experience of illness resonates with yours? The only answer that comes to mind for me is Snowden, the doomed airman in Heller’s Catch-22, spilling his guts in the cold, thin air — and he wasn’t sick, just shot up.

Granted, there are lots of books with sick people as tropes, your Afflicted Saints and Deserving Sinners — but those stories do not speak to my experience, except to insult. There are plenty of memoirs about diseases teaching the author the meaning of life, or unconditional love — but I’ve been sick long enough to know better. There are even humor books, full of placebo jokes that don’t really help anyone — just anesthetize.

There are very few good stories about chronic illness. This is a problem both in terms of how the world sees us and how we see one another. Obviously, if our culture does not talk about our experience, we cannot expect anyone to even pretend to understand us. I feel like, if you’re sick, that vast absence should at least make you a little bit angry.

But worse than that, if we do not have stories to tell one another, we do not have an identity as a community. Our stories can take many forms — and our blogs are crucial, in that respect, but they lack the power and presence of books. For that matter, I could have asked for favorite movies or TV shows, and I expect the result would be about the same. We have no myths, no heroes, no history as exiles from the “kingdom of the well”, to quote Sontag.

If you want to marginalize a group, to exterminate an identity and eliminate a people: erase their stories.

Or prevent them from ever creating any — and what prevents us as sick people from sharing stories is the idea that our diagnoses differ all that much. This is the consequence of a blindly clinical approach to illness, as opposed to a social understanding. I have been blogging for six years, more or less, about this problem — it is exactly the reason I started PFAM — and it is still frustrating.

To wit, Amy Tenderich and Mike Hoskins at DiabetesMine.com submitted a review of Kerry Sparling’s new book about living with diabetes, Balancing Diabetes. They did not say, ‘this is our favorite book about illness’, but it is at least a book about an illness. Kerry is a friend — she blogs at Six Until Me — and I am glad she has a book out, but my guess is that approximately zero people reading this post will buy her book. (And it’s too late to enter the giveaway.)

Which is too bad, because her subject matter will seem familiar to people with other diagnoses: “familiar D-topics like growing up with diabetes, exercising, sibling relationships, parenting with diabetes, work and travel, school and friendships, going off to college, diabetes advocacy, and the fear of complications.” All that stuff could resonate with a wider audience, but the D might as well stand for ‘divisive’ — focusing too closely on the diagnosis keeps us from appreciating the experience of illness.

I know Kerri has worked hard to build an audience around diabetes, and this book is for that audience, and I don’t begrudge her that. I’m just frustrated that I asked, “what is your favorite book about illness”, and this is the answer I got. Maybe I’ll get a copy for my diabetic tabby; she struggles with the exercising part, for sure.

Along similar lines, Shruti at Lifestyles of the Ill and (Mostly) Blameless submitted a review of How to Be a Friend to a Friend Who’s Sick — giving it 3 of 5 stars, from which you may infer it’s not her favorite book about illness. This isn’t even a book for sick people, really — it’s for our friends and family and loved ones, and it seems like it would be very helpful in that respect. But it’s not about us. It’s not ours.

The second part of this month’s PFAM was a new thing, The ILLiteracy Project, that I wanted to use to talk about the stories we tell about illness. For the first installment, I chose Laurie Edwards’s In the Kingdom of the Sick — first because it is an excellent book about illness, and second because I know a lot of bloggers have read it.

Incidentally, if anyone asks you what your favorite book about illness is, you cannot go wrong with In The Kingdom of the Sick. I have read it, and it is my favorite book about illness. 

Anyway, I did not get the conversation I wanted about Laurie’s book, and I feel like recycling reviews would not do her work justice, so TIP is on hold for the time being. I apologize to those who submitted, but I do want to have this conversation and I will try to do something with your reviews at some point — just not today.

Thanks to everyone who submitted. I apologize if this edition seems rant-y, but I really do believe our stories matter, that they are important to how we understand our lives with illness.

 

5 Responses

  1. Aviva March 21 2014 @ 7:33 pm

    I wanted to participate this month, but life got in the way. :P Fwiw, my favorite fiction book about chronic illness is Patient 002 by Floyd Skloot. Interestingly, the real-life version of the novel is covered, in part, in the essays in his non-fiction The Night-Side: Chronic Fatigue Syndrome and the Illness Experience, which I also highly recommend.

    My favorite non-fiction book that isn’t written by Laurie Edwards is The Sound of a Wild Snail Eating by Elisabeth Tova Bailey, which helped me feel better (calmer, more accepting) about the way my world shrunk when I got sick. A close second is The Pain Chronicles by Melanie Thernstrom, which really resonated strongly for me and somehow validated my pain experience.

    I liked your idea for a “book club” kind of discussion, but I think I needed a more specific prompt/question to be able to talk about specifics in Laurie’s book.

  2. Leslie Rott March 22 2014 @ 12:55 pm

    I wanted to submit, too! I’d love to hear more about the CI books that you like. I think you’re right, there are not a ton of books. But I have read a lot of CI books about illnesses other than lupus and RA, and have found that a lot of the experience is the same. I would love to find a way to have more conversations about CI books.

  3. Barbara Kivowitz March 23 2014 @ 12:49 pm

    I don’t want to come off sounding self-promotional – but I do believe in my own book: IN SICKNESS AS IN HEALTH: Helping Couples Cope with the Complexities of Illness (Roundtree Press, 2013). One thing I say when I speak at conferences or to groups of clinicians and patients is that the illness may reside in one body, but if you’re part of a couple, it’s two lives that are dislocated and two wills that can be enlisted to help. Our interviews with couples, surviving partners, and experts cross illness lines and demographic lines. We wrote this book because when my co-author and I got sick, we were stunned at the impact it had on our partners and how much our partners contributed to our wellness – and there were no resources out there. Our hope is to have this book help other couples dealing with illness

  4. dx March 24 2014 @ 9:57 pm

    Aviva — totally understand. Thanks for the recommendations. I’ll work out some specific questions for the book club. For any PFAM, you can always add your two cents in the comments.

    Leslie — I think you’ve read all the books I’ve found relevant. Given the paucity of good work, I often find it more helpful to read books as if they were about chronic illness, rather than read CI-specific books. I’m planning to do a post on Catch-22 that will explain what I mean.

    Barbara — don’t worry about it! Your book is very helpful. I have a review copy that I’ve been meaning to, um, review for a long time. I will get to it soon, but in the meantime anybody reading this should consider a very useful resource on the topic of illness and relationships.

  5. Julie July 23 2014 @ 4:59 pm

    For a long time I was thinking about writing a book. One thing I’ve found frustrating is just what you mentioned: the lack of books that I felt spoke to me. So many are focused on one illness or another, whereas I have several illnesses that overlap and few are the center of focus for books. I think it’s important for us all to hear voices that represent us, so I finally decided to do an anthology instead. I hope it helps to fill at least part of the void. Please consider submitting a story! (Info is here, if you’re interested: http://chronicillnesstruths.tumblr.com/aboutthebook )

2 Pings

  1. Book Review: In the Kingdom of the Sick | Lifestyles of the Ill and (mostly) Blameless March 21 2014 @ 4:17 pm
  2. Book Review: How to Be a Friend to a Friend Who’s Sick | Lifestyles of the Ill and (mostly) Blameless March 21 2014 @ 4:18 pm

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