Last spring, I took a big, firm step out of the world of illness and into the world of wellness. Very much to my surprise, this transition — which I had prayed and worked and dreamed for — was extremely unpleasant. I am still processing how such a miracle felt painful.
I know at least one of the reasons is that as I re-gained capacity, I needed less energy to care of myself. This brought a literal sensation of picking-my-head-up. Instinctually, this newfound energy — that I previously directed inward to navigate my own health problems — went outward to explore our collective ones. The subject of my daily conversations and musings shifted from my healing, to our healing. It was as if everything I had learned to understand my challenge got immediately re-applied to our bigger challenges.
All at once — or so it felt — I got a much deeper understanding of the state of health in America. I got a picture in my mind that was very grim. This knowing hit me like a hard wave — which makes me feel like it must have been inside me for some time. But I could only access it when I had the space to.
I will be honest: this near-instantaneous download of awareness was very intense. For weeks, the picture of the America as I am now seeing it, made me — for the first real time in my life — angry. There were days I talked myself out of climbing on the roof and shouting: “We are so sick, and we don’t have to live this way.” I have spent the last two seasons making my way through that anger. Which is how I can share some of my perspective now.
The gist, is this: When I was sick, I knew I wasn’t alone. I knew there were other sick people out there. I knew I hadn’t drawn a short straw. But what I didn’t understand at the time was the order of magnitude of chronic illness in my society. I didn’t comprehend just how not-alone I really was.
Like a ton of bricks, and somehow for the first real time, my family’s health story hit me:
My father had his first heart attack at age 42. His second at 48.
My mother got Hashimoto’s thyroid disease at 21, was bed-ridden with lupus at 48. She had uterine cancer at 52.
My sister got Hashimoto’s thyroid disease at 21 and juggled a host of associated symptoms for 15 years.
My brother has neurological damage. (Most of which came from his time spent living in a Russian orphanage.)
My first chronic symptom surfaced at 16. At 25, I fell down a long, dark hole of chronic illness. I have spent the last 5 years crawling myself out.
These are my immediate family members. By all accounts, I realize, my family has been very sick. At first, you can write it off…maybe we just had bad luck, bad genes, or particularly bad habits. So, I expand my lens.
My mom is 1 of 5 children. Let’s look at her side. My mom lost one of her brothers when he was 48, technically of septic shock, though his weight of nearing 400 pounds and gradual decline in functionality of his organs likely did not help the infection. Of her other siblings, one sister has severe Celiac disease. The other likely has one or more psychiatric diagnoses. Her youngest brother says that he feels very well — which is wonderful! — though he does have very many high risk factors for chronic illness.
How about the other side?
My father is 1 of 7 children. My dad lost his sister (my aunt Roberta, who I recently posted about) to uterine cancer and MS at the age of 66. Of his other siblings, one has had a quintuple bypass surgery and a stroke, one has several autoimmune diseases including severe Celiac disease, one has psychiatric issues. Last summer, one of his other siblings called my dad in a terrified panic, because his doctor made him feel like he would die imminently of a severe heart attack. Thankfully that has not happened. Of the 7 siblings, there is one who I do not know her health status, but I haven’t asked.
These are just the stories of my “blood” aunts and uncles. I think you get the picture, so I will spare you the stories of their spouses, of my cousins, of my cousins’ children — one of which had a 20cm tumor in her uterus last year, a centimeter for each year of her life.
Maybe, somehow, both sides of my family drew a short straw. Maybe — even though my big family has wide variation in income level, insurance status, geographical location, race, professions, and more — we just had bad luck. How about other important people in my life, whose genes I don’t share?
My childhood mentor — my dance teacher — has suffered from chronic migraines, pain, and fatigue the whole time I have known her. Her only child — in her 20s — was diagnosed with an autoimmune disease.
My high school mentor — the advisor to my student volunteer organization — is recovering from breast cancer.
My college mentor — a dean at BU and the first advisor to the Center — lives with an autoimmune disease, which in the past few years she said almost killed her. Each of her 2 siblings have an autoimmune disease. She recently lost a brother-in-law to his autoimmune disease. Her partner has an autoimmune disease.
My other college mentor — another dean at BU — is battling prostate cancer, for the second time.
My new team at work is made of 4 people. Of the 4 of us, 3 of us have volunteered that we have a serious chronic illness that takes effort to manage. I have not asked the 4th person if she is sick. We are all under 35.
Some of my closest friends have been cripplingly sick. I’ve comforted a friend battling suicidal depression, digestive issues, and infertility. Another friend battling severe immune, gut, and digestive issues. Both a friend and a lover, each in the throes of battling Lyme disease. Like me, all 4 of these high-achieving young people had to take considerable time off of work to deal with illness. Like me, all got sick in their 20s. Each month, I learn of a new handful of my friends (my age) who are battling chronic illness.
I thank god that I have not personally lost a close friend to chronic illness. But I have comforted or witnessed many of my friends who have lost young friends to cancer, suicide, epilepsy, and more.
My sister gets so sad to see so many of her friends losing their parents to chronic illness in their 50s and 60s. I tell her I would be sad too, if I didn’t know of people dying in their 20s and 30s.
I wish this were the full laundry list of everyone in my life who is sick, of all the young people I know who are sick. But it’s not. This is not everybody.
You could convince me that my community of friends and loved ones just have bad luck — if all of the data didn’t suggest otherwise. All forms of chronic illness are massively on the rise — from heart disease and cancer to suicidal depression and all autoimmune diseases. Childhood cancer is the leading cause of death by disease in children. And loads of other symptoms are on the rise like infertility, rashes, anxiety, digestive issues, insomnia, depression, severe allergies, and so many more.
This is all changing so incredibly fast, so it is hard for statistics to keep pace. We continue to see reports of America’s declining life expectancy. I see statistics that say anywhere from 60% to 75% of adult Americans live with chronic illness. 54% of American children are said to live with chronic illness.
I will say it again: 54% of American children are said to live with chronic illness.
I do not believe this is normal. I do not believe we have to live this way. I believe we can change these outcomes. I believe we can heal.
Now, don’t get my wrong. I believe that illness is normal. In fact, I believe illness is fundamentally human. I believe it is normal to get infections and illnesses, where illness lasts some time — days or weeks — and then we get better. What I do not believe is normal is for the majority of us to live with ~chronic~ illness, where we shave years and decades off of our lives or off the quality of our lives.
I also believe death is normal. I am very comfortable with the knowledge that we will die. So, I am not afraid of dying. I am afraid of our rates of premature death. I am afraid that we might miss out on our chance to be alive.
The way I see it, we have changed pretty much every thing about the way we live over the past 50 years. We have dramatically changed the food we eat — from the way it is grown, to the ingredients we eat, to the nutrients in our soil, to where we physically eat our food (cooked at home versus in restaurants). We have changed the quality of the water we drink, the household products that we consume and put on our skin, the medicines we take, how much we drive, how much we move, how much we are looking at screens, how much time we spend in community, how close we live to family members and others who can take care of us, the amount of stress we live with. We have fundamentally changed the delivery of babies, and our attitudes around childbirth. We have changed all of these things very quickly, and now we act surprised that they have had serious health consequences.
These changes have invited an imbalance so severe that most days I feel like we have turned the floor-board upside down, and we are hanging by our feet. Now, we are all looking to drugs, surgery, and health insurance to turn the world right side-up. Drugs, surgery, and health insurance can act as lifesaving band-aids — which I am eternally grateful for. But these things cannot and will not solve the root cause when the problem is that we are hanging by our feet. To solve our epidemic of chronic illness, we must turn the world right-side-up, again. We must restore balance.
What is frustrating to me — but also incredibly hopeful — is that so many of our solutions to these problems are just so simple to identify. (Though not necessarily simple to implement).
The CDC has said that only 9% of Americans eat enough vegetables, that 3% of us eat enough fiber. I’ve read studies that show that ~50% of kids arrive to school dehydrated, which shrinks the brain, diminishes test scores, and inhibits a whole host of metabolic processes (1). We know that we are spending too much time on screens, which is disrupting our circadian rhythms, which undoubtedly is contributing to our collective sleep problems.
This is deserving of a whole post, but just to be clear: I do not believe that consumer choice is the most compelling explanation of this situation. In a world where 91% of us do not eat enough vegetables, “choice” — as my doctor says — “is a fiction.” Much more interesting is this question: How on earth did we create a society where vegetables are Rich People Food?
I am being profoundly genuine when I say that the first, most obvious steps to solving our collective health challenges are to get high-quality, real-food into people’s hands. To expand access to cleaner drinking water, clean household products, real tools to manage the high-stress in people’s lives, a good night’s sleep, and stronger, more resilient communities. We need to re-evaluate our practices around childbirth.
Do I think that a healthy lifestyle will eliminate all incidences of chronic illness in America? I do not. But I do think we have strayed so far away from the basic tenets of health that we don’t even know where we’d be if we got them right. If we take care of the basics, then we can devote our country’s brilliant doctors and researchers to studying true medical mysteries.
You can imagine that my thoughts impact the way I view the national health care conversation. Those thoughts are deserving of their own post. Maybe I will write that. For now, I will say that any candidate who is speaking only about health insurance — but not about true health or the important non-insurance factors contributing to our epidemic of chronic illness — is wildly, dangerously missing the mark. (Which is why, for the record, I think pretty much all candidates are missing the mark, save one.)
An important moment in my health journey happened on one Saturday, a year or so ago. Someone I was seeing, who was also sick, was expressing his very understandable frustration with chronic illness. He said (and I’m paraphrasing): Don’t you feel mad that you are dealing with all of this so young, while our friends are out there having fun on a Saturday, many of whom will never know chronic illness, and die peacefully in their sleep at 90?
In a moment of clarity, I realized: I don’t think my options are getting sick at 25 or dying peacefully at 90.
I will be eternally grateful that I got sick in a way that didn’t kill me at 25. Because I think if my body had waited much longer before getting sick, I might not have had the chance to heal.
Despite what might seem like bad health luck, I feel — truly, sincerely, deeply — lucky that my family members and I got sick when we did. We got to have our wake-up call, our “health day” — as my dad calls it. We got sick enough to wake-up, but not too sick as to be robbed of the chance to change. Our illnesses didn’t kill us. And we got the extraordinary privilege to dedicate our energy to relearning how to create health in our lives.
Though this awareness is heavy, I am hopeful. All around me, I am inspired by stories of incredible healing: My mom reversed her lupus, which doctors told her was not possible. She tells me that she forgets she ever had it. My sister, after 15 years of taking daily medication for Hashimoto’s, worked with her doctor to not only reverse her disease, but also get off the medicine — something that is basically unheard of with hypothyroidism. My friend who lost her fertility, is bleeding again. I am enjoying the miraculous recovery from an illness that doctors could not easily diagnose, let alone treat. And now because I have joined the chronic health community, I witness stories everyday of people who are healing from all sorts of “incurable” illnesses. So many people are waking up to new possibilities.
If you are intrigued, at all, by my perspective, here are some things you might consider to begin opening your eyes, if you are not already:
- You might start by considering your own health, by honestly asking yourself: Do I feel well most of the time? Of course, I hope to death that your answer is yes! However, if your answer is something other than yes, I ask that you might believe your own symptoms. Validate them. So often we — especially women — disregard our own symptoms. I’m suggesting that perhaps you don’t do that.
- You might then consider the health of those in your family. Who in your family is sick? Even if they don’t identify as sick, do members of your family live with chronic pain or something like it?
- Consider the same for your colleagues. For your friends.
- Take note when someone you meet tells you about their illness.
- If you start to see a connection, consider making the connection. Consider seeing the pattern rather than dismissing each story as a one-off tragedy.
- If you become more interested in our collective health challenges and want to begin learning more about the problem, I would be happy to point you in the direction of resources from doctors and others who are writing extensively about what is going on. We need more people to be listening to them.
Healing is possible. A more beautiful world, where we reclaim our health, is within reach. To get to that place, let us open our eyes.
(1) “How Not to Die” by Michael Greger, MD