By Lex Berko & Kelly Bourdet, Refinery29
. Something's been happening inside your body.
Maybe you've been feeling tired for some time. But, it's not an ordinary tired, the type you might experience after a stressful work week. This tired feels more like a complete shutdown, the kind that leaves you shaken about why you can't just get up and do something.
Or, maybe it's not fatigue, but instead you've had some intense joint pain for a couple of weeks. Or there's a worrisome rash on your upper arm. Or you've been plagued with migraines for months on end. Maybe you have all of these and more.
It could be the flu. It could be stress. It's possible you have a virus. That's what everyone, including your doctors, keeps telling you. But, no, something else is wrong. Maybe you don't know how to articulate it, but something has you in its grips at a far deeper level. You just don't know what it is.
This is the perplexing and uncertain life for many suffering from autoimmune disease. While each autoimmune disease is different, with its own timeline and constellation of symptoms, the general gist remains the same across the board: The body's immune system goes haywire and begins attacking the body itself.
Autoimmunity can strike almost any body part, at any age, at any time. However, of the 8% of the U.S. population that suffers from one of the 80 to 100 currently recognized autoimmune disorders, a disconcerting three-quarters are women. And, of those three-quarters, many are stricken between the ages of fifteen and forty-five.
. While medical researchers have been aware of this sex bias for roughly a hundred years, there is as yet no concrete answer to explain this imbalance. "There's quite a bit of research in that area, but we still don't have anything really definitive," Virginia Ladd told me. Ladd is the president and executive director of the American Autoimmune Related Diseases Association (AARDA), an organization that has been advocating on behalf of autoimmune sufferers for over two decades.
One of the possible theories Ladd cited as to why women are more at risk laid the blame on our hormones. Basically, the idea is as follows: Estrogen is involved in promoting immune response whereas androgens, hormones related to male development, are not. So, it's a possibility that the overreaction of the immune system may be accounted for by the immune-boosting nature of estrogen, which women have more of than men.
Beyond hormones, another possible explanation hypothesizes that the extra X chromosome that women carry may be responsible for their autoimmune susceptibility. According to Noel Rose of the Johns Hopkins Center for Autoimmune Research, that extra X should be silent. "The second chromosome in women is supposed to be inactivated, but sometimes is not," he explained to me. Genes that could predispose individuals to autoimmune disease may be present on that second X so when they are expressed, the risk of your immune system getting out of whack increases.
Recently, journalist and poet Meghan O'Rourke wrote in The New Yorker of her battle with chronic autoimmune disease and the frustrating toll it took on her social life and mental state. Her sickness mounted its attack over the course of several years, slowly wearing her down with common but non-specific symptoms like fatigue, rashes, and fever.
Doctors had ascribed her persistent state of exhaustion and discomfort alternately as a lack of vitamin D or anemia. It wasn't until much later when she reached out to a specialist that she was diagnosed with an autoimmune disorder.
.As she herself notes, her story of hunting a diagnosis for years before finally receiving one is typical. From the onset of an autoimmune disease, months can fall away as symptoms gradually build, disappear, and reappear in different combinations. Each flare up can be different - this time, it's gastrointestinal but last time, it was a rash. The lack of consistency is perplexing and troubling not just for the patient, but also for the medical professionals involved in treatment.
And, despite suffering from a diffuse collection of symptoms for the better part of a decade before receiving a diagnosis, O'Rourke actually considers herself fortunate compared to many others looking for answers. Her experience was, she told us, a speedy one (relatively speaking), "I was relatively lucky in that I think I probably only saw three [doctors]. By the time I was on my second doctor...he was just like, 'It's fine,' and it was very clear that something was wrong." Ultimately, she realized she needed to look for answers from a specialist, "It was so obvious that something was wrong that I paid a specialist in autoimmune disorders, even though she didn't take my insurance. So, that's how I got diagnosed. If I hadn't done that, I might still not be diagnosed."
"Sometimes, many of these diseases can present as just not feeling well and you're not going to first think, "Oh, somebody doesn't feel well for the past couple weeks - they have lupus!" Betty Diamond told us. Diamond, a physician and medical researcher focused on the autoimmune disease lupus, added that diagnostic requirements often force doctors to be cautious to ensure they are correctly labeling the disease at hand, which can account for some of the difficulty in obtaining quick answers.
Rose similarly noted that lack of symptomatic specificity among autoimmune disorders can lead to misdiagnoses and non-diagnoses. "The initial symptoms [of autoimmune diseases] are very non-specific," he said. "They could represent infection. They could represent cancer. They could represent a number of things. So, until the disease becomes symptomatically characteristic, things that a doctor can recognize as true diagnostic signs, the diagnosis is often difficult."
. Ladd agreed with these points, but also suggested that there is a larger coevaluation issue confronting autoimmune patients as well. "There is no autoimmune allergist," she lamented. "So, a patient may seek specialists according to what's happening at the time. If they have joint pain, they may see a rheumatologist. Maybe the next time, their flare up is gastrointestinal and then they're seeing a gastroenterologist." With no single person or center as a concentrated cache of autoimmune knowledge, patients may only get bits and pieces of the story because that is all their doctors can afford to give them.
O'Rourke, who controls her symptoms through a combination of diet and traditional and nontraditional medicine, says that a multi-pronged approach to healing was most important for her. "This is not something like pneumonia or cancer," she emphasizes. "You need a three-dimensional approach. If you just throw medicine at it, it's not addressing the whole situation. In some cases there's no medicine to even throw at it."
With the incidence of autoimmune disease more generally on the rise, it may be time to tackle these issues and fill some of these gaps in our understanding. But, obtaining answers costs money. Currently, research into autoimmune disease is underfunded by all accounts. The National Institutes of Health (NIH) was hit hard by sequestration. This year alone, NIH will cut over 700 research grants. However, Diamond noted that even before the massive governmental cuts took place, funding was lacking. "There are amazing opportunities," she said, "amazing, good science to be done and, really, the resources are what's limiting at the moment."
Overall, it's a complicated situation. There are a whole lot of factors to consider, but there remains no single narrative of autoimmune disease. We only have theories, albeit well supported ones, on why more women are affected than men. We don't yet have a center dedicated solely to autoimmune disease in the United States (although Israel does). The ambiguity can and does subsume people. For many, the journey with an autoimmune disease follows an unpredictable path of flares and recovery.
For O'Rourke, her condition was relatively under control until, ironically, the week following the publication of her New Yorker essay on the topic, when she experienced a flare up: "So you start all over again - going to lab tests and trying to find any other piece that they've missed along the way. You have to go back." she continues, "I think what's different now is that I know and trust that it won't always be like this."