"Great books help you understand, and they help you feel understood." –John Green
I recently felt that I wasn't getting anywhere with my second memoir and needed to be able to approach the story more objectively. I felt like I was spinning my wheels, complaining too much, and struggling to find an adequate and fulfilling ending. So, as any good writer would do, I stopped writing and decided to start reading. I decided to focus my reading on what I found out are called "illness narratives." Stories, both fiction and non-fiction abot illness (living with it, managing it, understanding it etc.) Over the summer I read Autobiography of a Face by Lucy Grealy (Cancer-not as great as I'd hoped), The Fault in Our Stars by John Green(Cancer-MUCH better than expected), and Waiting for Daisy by Peggy Orenstein (re read it, very objective book about infertility).
As I continued to research books and illness narratives (preferably about something OTHER than cancer, not hating, just feel like cancer is the Marsha Brady of illness) I came across the non-fiction sociology book In the Kingdom of the Sick by Laurie Edwards. I was intrigued by the book reviews, the prescription pill bottle on the cover and the very catchy title. I recently made a comment on Facebook about how I used to live in the light but now I live in the dark but can see the beauty of the stars, and the title of this book actually comes from a quote by Susan Sontag precisely about that:
So, I picked up the book, delved right in, and have learned SO much.
For those of you that follow me on Facebook, you know I've been ranting and raving about this book for a couple of weeks. I'm about 75% done with it (have slowed down my reading due to moving) but even if the end sucks (which I doubt it will), I have gained a new and better understanding of not only the medical community, but of where my own biases, insecurities and overall mentality about my chronic illness comes from.
And guess what...all the feelings I have felt in the past (and I'm sure many of you have also)...THEY'RE NOT YOUR FAULT! And those feelings are real, it's not in your head! I'm not neccessarily talking about feelings of pain, I'm referring to those feelings of not being heard and understood by your doctors and nurses or those times you felt belittled by a male doctor (if you're female) for dismissing your symptoms and telling you it's in your head. Guess what? You now have the priveledge of blaming our society, and the social bias against accepting and understanding chronic illness and pain.
These are just a few of the insights I've gained from reading this book so far. Although I started reading the book a little apprehensively because I didn't want to be bombarded with technical terms, cold statistics, hard to read jargon, and a boring timeline of illness, after just a few pages in, I realized this book was none of that.
What I love about this book is the following:
1. Laurie Edwards suffers from chronic illness and pain herself. She has made it her job in life to study the psychosocial effects of illness, and to advocate for patient rights. I trust her research, personal experiences and information more than I would someone else's.
2. The book effortlessly combines meaningful statistics and information with real life patient stories and anectdotes.
3. She dedicates two whole chapters on breaking down why women's health issues are so misunderstood, undervalued, and misdiagnosed.
4. She makes it a point to discuss illnesses that are not just cancer.
5. She really helps you understand why doctors struggle with diagnosing and treating chronic pain.
6. It's easy to read, supported by data, and provides various sides of controversial issues.
What I wish this book did more of: (Although I'm not finished, so it may do this near the end, but doubtful)
1. Study the different experiences with doctors and hospitals of minorities with chronic illness vs. those of caucasians. She often makes a note of how there are differences but doesn't expand on them.
2. Discuss how (socially and culturally) minorities manage chronic pain and illness differently and how that impacts survival rates, treatment etc.
As you can see, there is not much more that I would change or add and the little I would like to learn more about it is clearly based on my own racial bias. This is a book I wish I would've read the day after my diagnosis. It would have saved me so many years of heartache, frustration, guilt and shame. But perhaps it came into my life right when I needed it most, I don't know if I would have had the same openness to accept the information then as I do now.
This is a book I want to gift to all of my chronically ill friends. I highly recommend reading it, as anyone, from a health professional to a patient to a caregiver can gain a lot of insight on how and why the medical community is the way it is and why we think and feel what we do when we see doctors.
I'd love to share more about all the things this book has made me feel, but I'll just let some of my favorite quotes and "aha" moments do it for me...and perhaps it will entice YOU to read the book or buy it for that friend of yours that has Fibromyalgia or MS.
Aha Moments and Favorite Quotes:
"Chronic illness is the leading cause of death and disability in this country, with seven out of every ten deaths attributed to chronic diseases"(Edwards, 11).
"'The fact that you're just not going to get better seems unbelievable to most people.....There must be something you can do that you aren't doing.....something should work, and if you're not better, then you're not working hard enough. It's frustrating, it's everywhere...and it's just wrong....I can't think or eat or exercise my way out of these illnesses, no matter how hard I try'"(27).
"The very nature of chronic illness--- debilitating symptoms, physical side effects of medications, the gradual slowing down as diseases progress--- is antiethical to the cult of improvement and enhancement that so permeates pop culture" (34).
"'For decades now, life expectancy has been rising. But the longer we live, the longer we die'"(Gever/Edwards 44)
"We should not treat incurable people as unsolvable problems"(67).
Chapter 4:(Women's Health Movement and Patient Empowerment)
Probably my favorite chapter
"For years, it didn't occur to me that I could argue with my doctor's results, even if they were contrary to what my body was telling me" (74).
"'Just because we don't understand the cause doesn't mean it is not real...This is part of what's so bad about this disease. People feel responsible for it'" (75).
"A survey taken by the [AARD] found that 45% of patients with autoimmune disease were labeled as chronic complainers early in their diagnostic journeys, with the resulting delay in diagnosis often leading to organ damage from lack of appropriate treatment" (78).
"Unless you live with and experience the looming threat of symptoms firsthand, you can't possibly understand the emotional and physical toll of chronic illness" (85).
"Another potential consequence of cause-related marketing and activism is the expectations put on patients...'the tyranny of cheerfulness' is associated with many of these events (runs/walks). We know how comforting and necessary images of empowered survivors are. However such emphasis doesn't leave room for people who don't see this diagnosis as a lucky gift..The issues apply with chronic illness...For one, there is obviously no finish line...we just live with the symptoms that wax and wane...Without the finish line that denotes survivorship, there is not the same level of cultural awareness or acceptance of our diseases" (100-101)
"The phrase Tired Girls has stayed with me for years, because I know so many Tired Girls, because when some of my conditions flare, I am that Tired Girl who pays for the eneregy she expends...The Tired Girl stands for so much that society disdains: weakness, exhaustion, dependence, unreliability, and the inability to get better...She is far removed from the cancer survior triumphantly crossing the finish line....[she] has few cheerleaders...and often... wouldn't even know how to define what or where [her] finish line is" (103).
"'The Girl Who Cried Pain' found that women's reports of pain are taken less seriously than men's and they are less likely to receive aggressive treatment than are men. In fact, research shows that men who report pain are more likely to receive painkillers...while women are given antidepressants" (115).
"Lack of understanding from physicians is both an individual and institutional problem; even in the last years of the 20th century, pain was not an established part of medical school curricula"(118) - My WTF moment
"While chronic pain is as prevalent as cancer, cardiovascular disease, and diabetes combined, the NIH spends 96% less on research on chronic pain than on these conditions"(126).
That's it so far...I am in the middle of Chapter 7 of 9 chapters total. There were so many more quotes, but I'll let you pick up the book to read more. I am fascinated by what I've learned so far and intend on picking up her first book: Life Disrupted: Getting Real About Chronic Illness in Your 20s and 30s
I truly appreciate this book because it has allowed me to better understand why my doctors behave the way they do, how fortunate I am to actually be living in this century and not just a few decades earlier when technology wasn't as advanced and Scleroderma was a death sentence. And even though I get frustrated by the lack of answers I get at hospitals and doctor's offices, I now know that the field of medicine is still a very new field and doctors are only doing what they can with the little knowledge they have. While I will always demand respect as a patient and intend to have a say in my care and treatment, I cannot get upset with the trial and error process of treating my disease anymore.
It is what it is. Kind of like when I try a new lesson on my group of 25+ students and somehow only 12 get it....what do I do? I reteach, and try again until I get it right. But you know there's always that ONE kid...either way, it doesn't do any of us any good to get mad at me or the kid(s)...we just have to keep trying till the light bulb turns on, or in my case, the treatments work.
I hope to use what I learned from this book to approach my memoir more objectively and reflect on past experiences with my illness and with doctors and hospitals in a more compassionate and understanding way. I also hope it will inform and guide my future interactions with the medical community so that I can receive better care and learn to thrive in life and not just survive.
My next book review will be on The Wounded Storyteller by Arthur Frank which discusses the literary theory and structure of illness narratives. (Basically the three stypes of narratives that authors can use to tell their story). I am also still very much interested in reading memoir about illness so if you have any recommendations, please share!