His teeth moved in his mouth like they weren’t cemented in place—were they dentures or just loose? Was it a twitch he had in his jaw that made his upper teeth push against his lower teeth rocking them forward like that? Was it just his age—will my teeth soften too one day? Jack was in his nineties, after all. That’s why I liked him so much—he had almost a century of life in him, nine decades of sorting through the garbage life can sometimes hand you—learning about humanity, empathy, and compassion. His eyes had seen so much and his heart had held agony and released it more times than I could even imagine. I sat at a diner with him on Maui—the island I dubiously called home and the island he inhabited only in the winter, escaping Canada’s cold. Living there, I sometimes felt like I was either waiting for him to come or missing his presence—he was always on my mind. I met him a couple of years earlier when I was vacationing on Maui. I overheard him in a conversation talking calmly and precisely about the effects of growing up with alcoholism in the home. He didn’t grow up that way. It was not his path, but he seemed to understand what it was like and have a compassion that I had yet to meet. I stuck to him, maybe he became one of my collectible father figurines. I don’t really know. I only know that I wanted to learn from a man with a heart like his. So I jumped on the opportunity to spend as much time with him as possible over those few winter months of 2011 in an effort to learn faster— I was dying to get ahead of myself, get ahead of my youthful age of 24, desperate to outsmart my humanity and escape the traps that maybe he fell into. Why, oh why, wasn’t I already at that plateau—that juicy plateau of nothingness and comfort. I was tired of navigating—no more obstacles, please. I sat with my head resting on the top of the booth and said, “do you think I’ll be successful in life?” Jack said, “I see you. I see how hard you’re trying. You have to be careful. You’re going to exhaust yourself. Women have a tendency to overdo it. I’ve seen it all of my life. Some women suffer in an effort to over achieve. If you’re not careful, you’re going to burn out way too early in life. I see it in you.” I knew he was right in that moment. I mean, we were just trying to have a cheeseburger on a Saturday night, but my head was diving into the future, diving into all the things I needed to accomplish between that night and the age of 34: I’ve gotta get home and do the dishes, dust the floor, have sex with my boyfriend, do we have enough sex, do I please him, do I want to live here, what am I going to do for a career if I’m not acting, when am I going to write my book and pick up my camera, and I haven’t read the news all week, and this all has to be done in the next 10 years so that I can have a child, and my god, I don’t think I want to do that on Maui so I should probably start preparing for my move to…somewhere..Colorado, Los Angeles, New York, Oahu. But I also knew his caution wouldn’t work, I would have to experience the burn out myself before I was willing to change. I got sick with Lyme disease two years later: The ultimate burn-out. And from the moment I was diagnosed, I couldn’t help but hear his sentiment on repeat in my brain. I was only 26 and ready to tap out. And when I started to meet woman after woman after woman who were all also sick with Lyme or autoimmune challenges, I started seriously pondering the source of our “sickliness.”
I know roughly 80 women (mostly under the age of 40) that are sick with Lyme, autoimmune disease, cancer, or mysterious and rare illnesses yet to be diagnosed or completely misunderstood. I know about ten men with similar struggles. These are all people I have directly spoken to—or befriended— over the last three years. 75% of those affected by autoimmune disease are women with thyroid diseases and lupus holding a 10:1 ratio. Autoimmune related illness is one of the top ten causes of death among females under the age of 64. People are dying—mostly women. It is estimated that 50 million Americans are suffering from autoimmune disease while around 13 million are suffering from cancer worldwide (just to give an idea of the magnitude). The funding for cancer research is much higher than the funding for autoimmune diseases—never fucking mind Lyme funding or research. As far as Lyme disease, there is no clear indicator if it affects women more than men. There hasn’t been enough research done because it is not recognized as a chronic or life-threatening condition. (It is. It is both of those things.) It seems to present differently —drastically so—between the sexes (perhaps due to hormones, our immune system response, and the fact that doctor’s don’t always hear us), but with Lyme I only have my personal experience: Everyone I have met with chronic, debilitating Lyme disease—upwards of 50 people— has been a woman with the exception of four men. FOUR. So WHY are women experiencing exaggerated illness specifically in our “child-bearing” years? Is it like my friend Jack said—because we are trying to be and do it all in the 21st century? Or is it because our immune systems are… whacky (I’m no doctor), or is it because we are being ignored by the medical community?
In too many instances, we aren’t taken seriously from the exam table. Doctor’s are quick to diagnose women as “hysterical.” Oh, I’m sorry, they don’t use that term today—because it’s not the 1600’s— the term “hysterical” has been changed to a more palatable yet still completely insulting “depressed” or “conversion disorder.” Jennifer Brea speaks eloquently and vulnerably on this topic and how it has affected her life on her most recent ted talk. Please watch it. On women, Brea says with grace: “Our immune systems are just as much a battleground for equality as the rest of our bodies.” I am lucky that I haven’t had to deal with the life-threatening consequences of this particular brand of dismissal. Sure, many doctor’s I’ve seen have denied Lyme disease’s existence and many have questioned if I was just really depressed and needed to get more exercise, but because I was lucky enough to have a physical manifestation on my body that produced the diagnosis of Lyme disease almost immediately, I could shrug the uninformed doctor’s off more quickly. Having a confirmed diagnosis from almost the start worked deeply in my favor. However, in order to get well, I had to become my own doctor because I couldn’t find a single MD who was willing to listen to me and truly care for me for a manageable price. I used doctors as extensions of my care, as my associates but I was the boss—again, as a woman, I had to take on more work and more stress to get the job done. I watch my boyfriend do little to no research on his physical issues. The doctor simply takes care of him—sure it’s not as complex as Lyme (that’s debatable), but not a single doctor has ever suggested that his pain was due to being under-exercised or over-sensitive. He talked; they listened. I have talked; they have laughed.
But that can’t be the only reason we are getting hit harder. Is it because of our hormones? Is it because of the battleground we are biologically built with in order to reproduce? Hormones are complicated as fuck (again, I’m no doctor). High estrogen/ low estrogen and high progesterone/low progesterone can have disastrous effects on the system. Well what the fuck? How are we supposed to stay in balance at all times. Many of us take extra amounts of estrogen or progesterone (putting our bodies through the wringer so that we don’t get pregnant) in our birth control. It has been noted that excessive amounts of estrogen end up suppressing the thyroid and activity of NK cells (natural killer cells).It has been studied and it is hypothesized that the reason women get hit harder with autoimmune disease is due to the relationship between estrogen and the immune system. We KNOW that hormones play a role because it’s been researched that our illnesses are directly affected by our cycles: ovulation, menstruation, and menopause. We tend to experience a serious symptom upgrade during any of these cycles. Speaking for myself, it’s fucking brutal. But then there’s pregnancy. Pregnancy. The whole creating life thing we do. Dr. Steven Gundry, an expert on autoimmune issues, says in response to why women are more affected than men: “A woman’s immune system must be able to do two things that are diametrically opposed; always be on the lookout for pathogens like bacteria and virus and parasites, but simultaneously switch to totally ignoring the largest parasite ever when you become pregnant. I believe, along with many others, that this dual role contributes to confusion for the immune system.” And, on top of that, some say that some fetal cells get leftover in our bodies after birth waging war confusing the shit out of our immune system. WHAT? OK so our bodies are much more complex than our male couterpart. Does that explain it? It hasn’t been proven.
Autoimmune disease and Lyme disease and their acute effects on women are being examined and heard, but then what about all of the other women I know that are suffering in similar fashions without a diagnosis. Or with a different diagnosis. I just keep coming back to my old friend Jack. Are we way too hard on ourselves? Are we burning out trying to climb to the top of our career, have children, be a homemaker, and a good friend and do it all within our chilbearing years? It’s a lot to ask for, isn’t it? It’s stressful—are our minds constantly busy and stressed trying to be everything to everyone? Is it our reaction to stress? Is it the pressure of our biological instict to be a shoulder to cry on while men find a way to quite literally “turn it off” and compartmentalize pain? None of this is to negate the stress that men experience. I wouldn’t trade places with them—I really wouldn’t. I just want to offer an honest look at our complex bodies and minds and in the hopes that we ease up on ourselves—maybe even expect less of ourselves (EEEK). That we slow down. That we rest more. That we keep speaking up for ourselves and being heard. That we come together and love one another. That we take just some of the pressure off in an effort to live presently and more fully.
Fun and love,