The Autoimmune Epidemic that is Devastating Women’s Lives

By June of 2014, I had finished several books on ulcerative colitis and the digestive system. I was no expert, but I had a good handle on the basics of my disease. I wanted to learn more, though, about autoimmunity.

So far, I knew just a smidge. I knew UC is an autoimmune disease, meaning the body mistakes some piece of itself for an invader and attacks. In my case, my body was attacking my colon. Immune responses often involve inflammation, so most autoimmune diseases are considered inflammatory diseases. I had heard colitis called an “autoimmune/inflammatory” disease, as if the two words were basically interchangeable.

(Autoimmune refers to a self-attack stemming from an overactive immune system. HIV, which is not autoimmune, involves immune deficiency, or weakness of the immune system.)

As my month-long experiment with the Specific Carbohydrate Diet continued, and as I researched other, more holistic diets I might switch to later, I also picked up a new book on autoimmunity. The book was Donna Jackson Nakazawa’s The Autoimmune Epidemic, and from the outset, it was captivating. It’s dense and chock-full of information, and I highly recommend it to autoimmune patients and their loved ones—and, really, to everyone.

Nakazawa herself has a debilitating autoimmune disease called Guillain-Barré syndrome. Armed with passion from her own personal experience, as well as a sharp mind and substantial journalistic skill, she has published several books about autoimmunity and also writes a blog. These are no small feats in themselves, but to me they seemed downright Herculean when I considered her disease. The woman has grit.

And she’s at the vanguard of a movement that’s fighting a devastating new epidemic.

Autoimmune disease is far more prevalent than most Americans realize. Nakazawa cites a 2005 National Institutes of Health report that says up to 23.5 million Americans had autoimmune diseases at that time, compared to 9 million Americans with cancer. Some estimates place the number of American autoimmune disease sufferers today at 50 million.

Autoimmune diseases are not only widespread; they’re often debilitating, and in many cases, 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… 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.

Nakazawa names some of the diseases in question, and when I read their names, I was startled to find many I’d heard of but that I hadn’t known were autoimmune. Type 1 diabetes, rheumatoid arthritis, multiple sclerosis, celiac disease, lupus, psoriasis, and fibromyalgia are all autoimmune. It’s worth looking at this list—you are sure to see many others you recognize.

TV and Internet airwaves are also filled with commercials for meds to treat these various diseases (“Ask your doctor about Humira!”), another testament to the diseases’ prevalence.

I was further startled to discover that I had other autoimmune diseases I hadn’t known were autoimmune. Autoimmune diseases often come in clusters—people who suffer from one are three times more likely to develop others. I found the thought of getting more diseases unnerving, then realized that actually, it had already happened to me.

I had Raynaud’s disease, which causes the fingers and toes to turn ghost white in cold temperatures as the body withdraws circulation. And my seborrheic dermatitis, a minor face rash that sometimes caused the skin on my nose, chin, and forehead to flake, was also on the list. I began wondering about my other chronic, unexplained inflammatory ailments: my acne, which, to my embarrassment, was persisting on my chin well into my thirties, and my chronic knee pain, which no physician or physical therapist could explain, but which had forced me to stop playing sports two years earlier.

The skeptic might wonder whether the numbers of sufferers above are exaggerated. Some autoimmune diseases, like my Raynaud’s or my seborrheic dermatitis, are inconvenient but not debilitating. Others, like ulcerative colitis, can indeed be devastating. Out of the 23.5 to 50 million sufferers, how many have something serious—something that can fairly be compared to cancer?

Nakazawa delivers more stats to clarify:

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.

To underscore these numbers, consider: while 2.2 million women are living with breast cancer and 7.2 million women have coronary disease, an estimated 9.8 million women are afflicted with one of the seven more common autoimmune diseases: lupus, scleroderma, rheumatoid arthritis, multiple sclerosis, inflammatory bowel disease, Sjögren’s, or type 1 diabetes, almost all of which can lead to potentially fatal complications.

Given all these stats, autoimmunity is something Americans should know about. And yet, despite these diseases’ prevalence, most people don’t understand that they’re all related to each other. That greatly diminishes their visibility. If each autoimmune disease is seen as rare, and they are not all linked in the public eye, the autoimmune epidemic will remain unseen. Invisible.

Nakazawa says, “surveys show that more than 90 percent of people cannot summon the name of a single autoimmune disease when asked to name one specifically.” I had been the same before my illness. Even since diagnosis, I’d so far been ignorant—I knew one woman and one man with multiple sclerosis, two young men with Crohn’s, several people with celiac disease, and at least a couple others with psoriasis, but aside from Crohn’s, it had never occurred to me that my new disease had anything to do with theirs.

Everyone recognizes “cancer” as a single phenomenon, even though it’s an umbrella term for a group of illnesses that differ widely in their location and behavior in the body. “Autoimmune disease” is another such term for another widespread, but related, group of illnesses.

The high prevalence of autoimmune disease is a new phenomenon. This is truly an epidemic—the rise in diagnosis rates cannot be explained by improvements in diagnostic techniques. Statisticians agree that autoimmune diseases have taken a sharp uptick in the last several decades in modern areas of the world, although the cause of this uptick is still unsettled.

Nakazawa points to science illuminating likely culprits, especially environmental toxins. She also touches on the Western diet, elevated stress levels, and lack of vitamin D as possible related factors. I will talk about all of these possible causes in a later post.

But most noteworthy to me is that autoimmune diseases are, in essence, modern diseases. Their rates are dramatically going up in modern and modernizing countries, not in all countries. Whether these diseases stem from the new and ubiquitous toxins we’re putting into the environment, the different ways we’re eating now vs. a century ago, the increased stress we’re putting into our bodies, our diminished time outdoors, or—quite possibly—some combination of the above, autoimmune diseases somehow relate to how we in the modern world are living differently from how we evolved to live.

In the years after first reading Nakazawa’s book, I would come to see autoimmune disease as the price of our modern decadence. We take many shortcuts to make our lives easier than they were in the millennia before industrialization. We throw clothes into a machine instead of washing them by hand, buy food at the grocery store instead of toiling on a farm, saturate that food with chemicals to preserve it so it’s easier to grow and keep. We cook and clean and drink by flipping switches. But the tradeoff is that we rely on plastic, industrial pollution, and a myriad of accompanying chemicals that saturate our lives. We also exercise less, interact less with the soil, and live almost totally disconnected from nature.

Some of us are paying a steep price for all our nifty, labor-saving inventions. It’s just a question of which of us will be susceptible—and you can’t know whether you’ll be one of them till you fall irreversibly ill yourself.

Far and away, though, it’s women who are susceptible. Nakazawa emphasizes, in this book and other writings, that autoimmune disease is a women’s health issue, a feminist issue, even a #MeToo issue. Four out of five autoimmune sufferers are women.

It’s unknown exactly why that’s the case. But a likely factor is that (cisgender) women are designed to bear children, and during childbearing years, our immune systems are stronger than men’s, in order to protect ourselves and the unborn during pregnancy. Autoimmune disease strikes primarily in the prime of life—for women, during childbearing years. It seems likely that our extra-active immune systems are more prone than men’s to becoming overactive.

This means the lack of awareness of autoimmune disease especially puts women in danger. It also dramatically decreases quality of life for millions and millions of women.

Nakazawa reports that on average, an autoimmune patient goes to six doctors before being correctly diagnosed, and that diagnosis often takes years. Along the way, many patients are dismissed by doctors who tell them that essentially, nothing is wrong with them. In other words, these patients, who are largely women, are being labeled hypochondriacs and left alone to suffer.

The more I read, the more grateful I felt to Nakazawa, and the more vexed that my doctors hadn’t bothered to mention autoimmunity to me except in passing. Now that I understood my colitis to be related to my other, more minor ailments, I understood that my problem went far beyond the need to heal my colon.

I didn’t just have colitis. In a way, you could say that my broader disease was autoimmunity. I did need to heal my colon, but also, I needed to soothe my body’s general tendency toward inflammation. For whatever reason, I happened to be one of the people whose immune system had become confused. I needed to address that, too.

I felt glad that in recent weeks, I’d already begun thinking more systemically about healing. I was on the right track in searching for a diet that was good for my whole body and that was anti-inflammatory.

Reading Nakazawa’s book got me all fired up. Mine was a relatively mild form of autoimmune disease—statistics say ulcerative proctitis doesn’t shorten life, and doctors said once it was under control, I should be able to resume most things I wanted to do: work, have kids, travel. But the “mildness” of my own disease only pointed to the seriousness of the autoimmune epidemic. Even my “mild” illness had, by June 2014, ground my life to a halt.

That realization enhanced my new passion for connecting to others with similar diseases. I pictured us all in our houses: women and men—but mostly women—languishing in silence, unable to do our jobs, agonizing over health care and bills and how to tend to children and spouses and careers amidst our own debilitation. So many lives, stuck in limbo for some reason society still needed to figure out.

I wanted to become a bridge between the healthy and the sick. After reading just thirty pages of The Autoimmune Epidemic, I put the book down, scrambled to the computer, and created this blog. Over the following week-and-a-half, I wrote several posts. I kept my blog anonymous for now, not advertising it to anyone but my immediate family, but I hoped that others with colitis or similar diseases would find it useful.

Unlike many other patients, I was still blessed with a certain amount of energy, and I had some background in blogging. I could try to translate my experience for the rest of the world.

I also Googled the American Autoimmune Related Disease Association, which Nakazawa had mentioned, and joined immediately. AARDA raises awareness of autoimmune disease and holds fundraisers for autoimmune research.

Cancer awareness went through a revolution a generation ago. There were fundraisers and the War on Cancer was declared, and people began talking about it more openly than they ever had before. We need a revolution now for autoimmune disease. It needs to be seen. It needs to be written into movie and TV scripts, mentioned in political campaigns, and talked about whenever we talk about health care reform or women’s health.

The more visible autoimmunity is, the more patients will be empowered, comforted, and cared for, and the sooner we can get to the bottom of how to stop the epidemic from spreading.