“A startling, poignant depiction of the progression of arthritis and of the person who is afflicted. Written from the heart with great lucidity and power, this book will alter forever the way you think about chronic illness.”
–Irvin Yalom, MD, author of The Schopenhauer Cure: A Novel
She begins, in the morning, by casing her joints: Can her ankles take the stairs? Will her fingers open a jar? Peel an orange? But it was not always this way for Mary Felstiner, who went to bed one night an active professional and healthy young mother, and woke the next morning literally out of joint. With wrists and elbows no longer working right, she’d discovered one of the first signs of rheumatoid arthritis, the most virulent form of a common disease. Out of Joint is her account of living through arthritis, a distinction she shares with seventy million Americans. While arthritis pain affects one out of three Americans, this book is the first to tell the personal story of the nation’s most common yet neglected disease. Part memoir, part medical and social history, Out of Joint folds the author’s private experience into far-reaching investigations of a socially hidden ailment and of any chronic condition—how to handle love, work, sexuality, fatigue, betrayal, pain, time, mortality, rights, myths, and memory. Moving from the 1940s to the present, this story of one life with arthritis exposes little-known medical research and provocative social issues: alarming controversies over arthritis miracle drugs, intense demands concerning disability, and the surprising and disproportionate number of women affected by chronic illness. From this prize-winning historian comes a call for healing through history, a moving meditation on the way chronic conditions can be treated by enlisting the past.
A few years ago – when I still had no clue what rheumatoid arthritis was – I woke up one day (it was around this time of the year, actually) with an enormous amount of pain throughout my entire body. Wow this is some whopper of a flu bug that I have! Never having experienced so much bodily pain in my entire lifetime (I was in my early 30’s) I assumed that the only thing that could explain so much pain was the flu – and a really bad flu, at that.
As each day went by things got progressively worse. I was confused that my continued bed rest was not helping my body heal; in fact it seemed like the more bed rest I got the more things hurt. About a week later, I remember saying at the dinner table: “Something is seriously wrong with me – nothing is supposed to hurt this much”.
As luck would have it, I was scheduled to take off for a six-week trip in just a couple of days. With no time to see a doctor, I turned to Google (of course). This was not the first time I had experienced pain – just a few months before I was on-again off-again with my knees, and had already purchased both a cane and a set of crutches. What was new this time around was the feeling that the pain seemed to be in every joint in my body.
I had been Googling “arthritis” for quite a while. But do you want to know something funny? Every time I passed the part about osteoarthritis and got to the part about rheumatoid arthritis, I would just stop and move on to the next page. Like clockwork. (I had a few months earlier read a paragraph on rheumatoid arthritis – but it just seemed so complicated – immune system disorder? That can’t possibly be what I have.)
A day or two before I set off on my travels, for some reason I still don’t fully understand, I ended up on a rheumatoid arthritis symptoms page and decided to actually give it a read. Symetrical pain in the joints. Check. Swelling. Check. Fatigue. Check. Morning stiffness. Check. And the list just went on and on… (I still remember the moment with so much clarity,) when I first told another person “I think what I might have is rheumatoid arthritis”.
Fast forward a few weeks into the future, and I am in The Green Apple – my favorite used book store in San Francisco. I can and have spent many countless hours going through the large bookstore section by section. While browsing the disease book section, I came across a copy of Mary Felstiner’s “Out of Joint: A Private and Public Story of Arthritis”. As I flipped through the book and read the covers, I once again thought (and I still remember the moment with so much detail as I stood in the bookstore): this is so eerily similar to what I seem to be going through. Into my shopping basket it went.
I started reading the book soon after, before I returned home from my trip (which also means before I had a chance to schedule my first appointment with a rheumatologist). I think I read it in a day or two; it was a book that I could not put down. When I finished, there was only one thought in my mind.
This is what I have?
Notice the question mark – doubt. There is no way I could possibly have this thing called rheumatoid arthritis. It just seems so scary and severe.
Of course, just a few weeks later, I was diagnosed with rheumatoid arthritis.
After I received my diagnosis, my mind was reeling for quite a while. On one hand, I was happy that we finally knew what was wrong. Maybe now there was some hope that we could fix what was wrong. On the other hand, every time I read more information about rheumatoid arthritis, I felt more overwhelmed and just cried and cried. Chronic? No cure? What does that mean to my future?
During this post-diagnosis period, I remember feeling that I needed something, anything, to ground me. One day I saw “Out of Joint” on my bookshelf, and decided that I would read it again – this time from the perspective of someone who knows that he has rheumatoid arthritis.
The second read was probably even more difficult that the first read.
This is what I have!
Notice the exclamation point – shock. Even though I did still did not want to believe it, little by little the realization and acceptance of my diagnosis of rheumatoid arthritis began to seep in. (This denial/acceptance cycle would eventually repeat itself many times in the coming years…as soon as a bad flare passed, I wanted so much to believe that my rheumatoid arthritis was gone, that I would actually believe it. Until it returned and knocked my house of cards over once again…)
I have returned to this book many times during my first few years of living with rheumatoid arthritis. Before the blogs, it was one of the few personal stories I could find of an individual living with RA. Now, when I read the book either start to end or section by section, I return the book to my bookshelf with a little more peace of mind, and with only one thought.
This is what I have.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!