It’s time to tell you what first prompted me to create this blog.
In June 2014, I already had a blog, katiesonger.com. I wrote there about my writing–my book about my Dad, lessons learned as a new writer. But I didn’t feel comfortable writing there about my illness. It was too much of a tangent from the blog’s topic, and besides, it was embarrassing. It also felt professionally vulnerable. Ron and I were moving to Portland this year, and I didn’t have a job there yet. What if potential employers Googled me and discovered my disease?
At the same time, I had the growing urge to somehow write about colitis. I’m a memoirist–when I go through an ordeal, my impulse is to write about it, to process the experience through writing. Colitis was virtually all I could focus on right now. So I’d started toying with the idea of a secret, anonymous blog, where I could pour out my thoughts and yet no one I knew would read them.
Then I picked up my latest colitis-related book, Donna Jackson Nakazawa’s The Autoimmune Epidemic. This book was my catalyst. I read thirty pages, put the book down, scrambled to the computer, created this blog, and wrote most of the previous posts in the following week-and-a-half. I kept the blog anonymous for now, not posting it on Facebook and only advertising it to my closest family members, but still, it was a relief to write. Only after catching readers up on my story did I finally pick The Autoimmune Epidemic back up and keep reading.
I want to share the passages that propelled me to the computer. (In all of the following passages, the bold was added by me.)
From the book’s forward, by Douglas Kerr, MD, PhD:
The numbers are staggering: one in twelve Americans–and one in nine women–will develop an autoimmune disorder. …The American Heart Association estimates that by comparison, only one in twenty Americans will have coronary heart disease. Similarly, according to the National Center for Health Statistics, one in fourteen American adults will have cancer at some time in their life. This means that an American is more likely to get an autoimmune disease than either cancer or heart disease. Yet we hear much more in the press about heart disease and cancer than we do about autoimmunity. And this silence is mirrored in relative fundraising by the National Institutes of Health, the major funding agency for biomedical research in the United States. …The NIH budget for cancer is over 5 billion dollars, ten times that of autoimmune diseases. The NIH budget for cardiovascular disease is over 2 billion dollars, four times that of autoimmune diseases. We have not yet recognized the urgency of the autoimmune epidemic.
Autoimmune disease is far more prevalent than most Americans realize. According to a 2005 National Institutes of Health report, at least 23.5 million Americans have autoimmune diseases (compared to 9 million Americans with cancer). Some estimates place the number at 50 million autoimmune disease sufferers!
Autoimmune diseases are not only widespread, but are often debilitating, and in many cases are life-shortening. Nakazawa writes:
Most of us, at some juncture in our lives, have played out in our minds how devastating it would be to have our doctor hand down a cancer diagnosis or to warn us that we are at risk for a heart attack or stroke. Magazine articles, television dramas, and news headlines all bring such images home. But consider an equally devastating health crisis scenario, one that you rarely hear spoken about openly, one that receives almost no media attention. Imagine the slow, creeping escalation of seemingly amorphous symptoms: a tingling in the arms and fingers, the sudden appearance of a speckled rash across the face, the strange muscle weakness in the legs when climbing stairs, the fiery joints that emerge out of nowhere–any and all of which can signal the onset of a wide range of life-altering and often debilitating autoimmune diseases.
Imagine, if you can: the tingling foot and ankle that turns out to be the beginning of the slow paralysis of multiple sclerosis. Four hundred thousand patients. Excruciating joint pain and inflammation, skin rashes, and never-ending flu-like symptoms that lead to the diagnosis of lupus. One and a half million more. Relentless bouts of vertigo–the hallmark of Meniere’s. Seven out of every one thousand Americans. Severe abdominal pain, bleeding rectal fissures, uncontrollable diarrhea, and chronic intestinal inflammation that define Crohn’s disease and inflammatory bowel disease. More than 1 million Americans. The incapacitating weakness and burning pain that accompany the inflammation of the joints and other organs and lead to the crippling effects of rheumatoid arthritis. More than 2 million patients… And, with almost every autoimmune disease, intolerable, life-altering bouts of exhaustion…
Each of these nearly one hundred autoimmune diseases derails lives. Taken collectively, these diseases, which also include type 1 diabetes, Graves’ disease, vasculitis, myasthenia gravis, connective tissue diseases, autoimmune Addison’s disease, vitiligo, rheumatoid arthritis, hemolytic anemia, celiac disease, and scleroderma…are now the number-two cause of chronic illness in America and the third leading cause of Social Security disability behind heart disease and cancer…Autoimmune diseases are the eighth leading cause of death among women, shortening the average person’s lifespan by fifteen years. Not surprisingly, the economic burden is staggering: autoimmune diseases represent a yearly health-care burden of more than $120 billion, compared to the yearly health-care burden of $70 billion for direct medical costs for cancer.
…[W]hile one in sixty-nine women below the age of fifty will be diagnosed with breast cancer…as many as one in nine women of childbearing age will be diagnosed with an autoimmune illness, which strike three times as many women as men–and most often strike patients in their prime.
Reading that last passage left me wide-eyed. I had inflammatory bowel disease. I was in my prime. In just a few months with the disease, I’d experienced all the symptoms Nakazawa describes, including the “life-altering bouts of exhaustion.” And yet, like most people, before diagnosis I had never really feared getting an autoimmune disease. My fear had always been cancer.
So there is a general lack of awareness about autoimmune diseases–what they are, how they relate to each other, and their commonness. This lack of awareness extends even to doctors:
The average patient with autoimmune disease sees six doctors before attaining a correct diagnosis. Recent surveys conducted by the American Autoimmune Related Diseases Association reveal that 45 percent of patients with autoimmune diseases have been labeled hypochondriacs in the earliest stages of their illness. Some of this, no doubt, has to do with the fact that 75 percent to 80 percent of autoimmune disease sufferers are women, who are more easily dismissed by the medical establishment when hard-to-diagnose symptoms arise. In half of all cases, women with autoimmune disease are told there is nothing wrong with them for an average of five years before receiving diagnosis and treatment. Patients–most especially women–are often left feeling both confused and marginalized.
I thought of all the other patients out there. My uncle and my friend with multiple sclerosis. My several friends with celiac disease. The many others with lupus, Crohn’s, and all these other illnesses. All of these people, isolated like me in their homes, quietly suffering.
Autoimmune disease is often invisible. Those with it are too tired to go out when they’re sick, and at least in the case of inflammatory bowel disease, the symptoms are so embarrassing that we’re loathe to reveal them to others. We hide them away; we hide ourselves away.
“People don’t see what lies behind the scenes in most autoimmune diseases,” [a patient] says. “Because we go through ups and downs, you might see us on a good day, between severe flares, when we seem to be perfectly fine. You don’t know that we’ve just spent six weeks in hell…By the time you run into me at the grocery store at two o’clock in the afternoon and say hello to me, I’m ready to nod and say, ‘Oh, I’m fine, how are you?'”
I was nodding vigorously. Already, this had happened to me countless times–only when I was well enough would I venture out to join Ron at social events or to walk down the block, where I often bumped into friends. To people who saw me, I must seem healthy and happy. Only Ron saw the many hours I spent lying forlornly on the couch, or clutching my stomach in pain, or rushing in nauseating discomfort to the bathroom.
So reading this got me all fired up. There needs to be more advocacy! Cancer awareness went through a revolution a generation ago–fundraisers, the War on Cancer–and people began talking about it more openly. People with disparate forms of cancer undergo different types of treatment and have different forms of disease, but at least they all know that they fall under the umbrella of cancer. We need that for autoimmune disease. An umbrella to fall under, a public awareness movement, more unity. Together we will be more empowered, more comforted, with better care and attention and research.
I Googled the American Autoimmune Related Disease Association (mentioned by Nakazawa), which does exactly the advocacy work that is needed. They hold fundraisers for autoimmune research. They organize campaigns. They create teaching curricula to boost awareness. I joined immediately.
And I created this blog, to do my own little part. To tell my story, one of millions, in hopes of fostering community and raising awareness. It would be anonymous, for now, but at least it was something.
Mine was a mild form of autoimmune disease, I believed. Statistics say proctitis does not shorten life, and I was told that once it was under control I’d be able to resume most things I wanted to do with my time. I should be able to have kids, doctors said, and to travel.
But I knew the “mildness” of my disease pointed to the seriousness of the autoimmune epidemic. Even this “mild” illness had, by June 2014, turned my life upside down. I wanted to join forces with the many other suffers out there, use my feeble remaining energy to advocate for others who were even worse off. Perhaps I could be a bridge between the healthy and the sick. My own suffering gave me knowledge of this new world of disease, but I was still blessed with a certain amount of health and energy, not to mention education and mental health and support. I could begin translating my experience for the rest of the world–the healthy group to which I had so recently belonged.