How one young woman found the limits of work, health, and beauty
As the holidays come around, the atmosphere of abundance can magnify for many of us a more challenging experience: loss. I consider myself lucky to have been free from deep loss for most of my life. But in the course of 2015, I lost two friends, a relationship, and half my physical stamina. I lost the dreams I had for my future and the promise and security of work I’ve done in my past. I also lost 25 pounds.
This is not the prideful ‘I’ve lost 25 pounds!’ of Slimfast renown, or the subtly braggadocious ‘Yeah, I’ve lost about 25 pounds’ of high school wrestling glory. My weight loss was completely unwanted and unintentional. Here’s how it happened:
I moved to San Francisco right after college, touting my fancy degree and confident that years of building the perfect resume would finally pay off. But four months into my first full-time job, I started noticing problems. I couldn’t sustain a full work day; 2 o’clock would hit and I’d be forced to take a nap in the hallway to make it to the end of my shift. When I left to work two part-time gigs instead, I found myself running late constantly, begging friends for rides because persistent back pain kept me dreading the long bus ride home. I quit one job, but I was still exhausted all the time, still fried after a 5-hour shift, and still losing sleep at night.
Then late this summer, a friend of mine passed away in an accident. In the midst of processing everything, I took special care to rest, cry, and talk about my emotions instead of bury them. Still, the next weekend found me on the floor of my living room, incapacitated by pain and exhaustion. I felt totally bewildered. What had I done wrong?
THE UNKNOWN ENEMY
One million people in the U.S. struggle with Chronic Fatigue Syndrome (CFS). No one fully understands it, ironically including those who are supposed to know how to take care of us the most. A visit to my primary care doctor (a misnomer if there ever was one) drove this point home.
“What are your symptoms?” she asked dryly.
“Chronic fatigue. Insomnia. No appetite.”
Innocently, she asked, “Have there been any difficult events in your life recently?”
I felt tempted to lie my ass off and say no. Instead, I gave into my compliant female conditioning and answered honestly: “I mean, I broke up with someone. And a friend of mine passed away a couple weeks ago.”
She gave me that sad, sideways look 5th grade teachers give their students when they get back late from lunch for the second time. “And have you been depressed before?”
Oh god, now I knew where it was going. I sighed: “Well, yeah, but this is…” I stared at the keyboard as she typed madly, “…different.”
Unfortunately, Ms. Primary Care had already checked out. I could already see her typecasting me as a poor heartbroken 20-something, yearning for someone to prescribe me a fun new kickboxing class where I imagined my ex as the punching bag and it would all be better soon. Maybe go to church for the dead friend. You know, it all works out.
“Well, if you’ve recovered from things like this before, this is probably just another bout. I’ll run the tests, just to make sure. But I think this should resolve itself.” She smiled falsely. “Make sure you get some exercise to keep those endorphins going.”
I wanted to find one of those elephant-sized energizer bunnies they place in front of car dealerships and whack her upside the head with it. ‘Depressed’ and ‘endorphins’, I’ve found, are doctors’ codewords for ‘what’s the easiest way for me to pretend you’re not sick?’ But with chronic fatigue, someone is sick, and there is no easy way to know why.
When weeks went by with my energy crumbling even further, I decided to call an Ayurvedic practitioner for comprehensive treatment. Her piercing blue eyes blazed calmly as I told her my health history — mental, physical, everything. Under the fading afternoon light streaming through saffron curtains, she listened intently to my story, looked straight at me and told me gently, “Honey, you’re malnourished.”
It made sense. All my tests had come back normal. I wasn’t depressed, and while the events of the year had impacted me heavily, they weren’t ‘the reason’ I was losing energy and weight so quickly. Turns out, my lifelong workaholism had done me more damage than a bout of anemia ever could. Years of subtly ignoring my needs for more sleep and better food had left my body with one course of action: shut down.
The next few weeks were a battle for me of trying to stay sane while completely turning my life around. I started a strict Ayurvedic diet — AKA beans and rice and LOTS of ghee — and dropped my exercise to easy yoga once a week. Being that I am both very Type A and a Class 1 Foodie, this was hard. The top thing on my to do list was ‘rest’. But I faced so much internal resistance to just that… I simply couldn’t believe that I was 25 and facing what I thought I wouldn’t have to think about until I was 60.
My mom was the only person who seemed as worried as I was. My friends didn’t quite understand, thinking maybe I was just ‘tired’ and could sleep it off like last night’s hangover. But I really needed help. So I decided to drop in on a support group for people with CFS.
THE SEARCH FOR SUPPORT
Now, a support group is a double-edged sword. You can certainly find solidarity in other people’s stories (most of them worse than your own), and build emotional stamina for the next phase. But it can also be depressing as hell. If you’re ever doubting your faith in Jesus, I wouldn’t recommend going to a support group for people with chronic pain or fatigue, because that’ll clench the deal for you. It’s intense hearing all the ways participants have suffered. It’s dark knowing that for most of them, things are only going to get worse.
Mostly though, the support group made me think about how we all ‘get by’ with ‘doing well’. I had spent enough time on Facebook while lying in bed to realize the presumptuousness of the life I had planned. As if through a peephole, I was watching my friends live the life I thought I had paved for myself: flourishing career, busy social life, energetic physical activities. A year ago, I was that person, living it up in San Francisco.
But that life was exhausting to me on a level I hadn’t anticipated. And the very friends I used to do so much with were now so busy with their chock-full lives that they didn’t seem to even register what was happening to mine. The people in the CFS support group — most of whom were 20–40 years older than me — were incredibly sympathetic, because they had all been through the exact same thing. Some had been abandoned by their entire group of friends, or even their families. I was lucky to still have people who cared, but that didn’t make the lesson less apparent: my forced change of pace had shown me just how little other people in my life were able to slow down.
The lack of understanding from my peers has definitely been tough to deal with. What really gets me, though, is how people now see me differently because of the changes illness has brought to my body. At 5’7”, my usual 150 pounds felt great to me. I never worried about my weight because I felt good in my body — I was always running, dancing, doing yoga, and playing sports. I felt happy, healthy, and whole. But since I’ve dipped to 125 (not quite underweight, but near to it), I get a lot more attention.
I get a lot more whistles on the street, a lot more ass-checks on the subway (yes, guys, we see you), and a lot more stares at bars and clubs. When I told a friend of mine about what I’d been going through, he said, with genuine concern, “I’m sorry to hear that.” Then he smiled. “But you look great!” My boss, in the midst of a frantic diet/cleanse/starvation plan in the weeks before her wedding, looked sad for a few minutes before she brightened up quickly and said, “Well at least you look good!” I’ve heard everything from: “you look perfect” to “you must have all the guys after you”, not to mention the look both men and women give me when I tell them I want to gain weight.
When I hear these comments, I want to scream. I know they are meant as a consolation, but to a sick person, well-meaning compliments bring little solace. People with chronic illness don’t need to be made to feel better about themselves; they just want to be supported in tangible ways. I mean, I’d trade every “You look great!” in the world for a “Want me to cook you dinner on Saturday?”
At any other time in my life I might have liked the extra attention, but now it just stings. Because when I’m at home, in those few moments between shower and clothes or bath and bed, I see more of the illness than anyone can. I can count my ribs; I can tell my skin is pale. That’s when it hits me how our culture puts an insane premium on outer appearance, at the expense of the truth of inner experience. It’s also when I realize the full weight of our social conditioning — we are all conditioned to idealize women who are unhealthily thin.
I’m tall, I’m light-skinned, and now I’m very, very skinny. I have the body most women would kill for, but it’s killing me: I would give anything to be back at 150 — or even 200 — and have energy again.
THE REAL REMEDY
With my relative stability and variety of health resources, I have a very high chance of recovering from the fatigue and weight loss I’ve experienced this year. I’m gaining weight slowly (thanks to a gazillion freshly baked pastries) and recovering some of my original strength. I know people, though, who live with CFS every day. Their experiences have taught me as much as my own.
Essentially, I’ve realized our society’s skewed perceptions of health, worth, and community. By upholding the importance of ‘work ethic’ over almost any other kind, our culture places value on individuals according to their labor power. Those who have the most money, status, and respect are often the ones who (are able to) work the most, while those with more menial or part time jobs — and especially those who can’t work — are rarely acknowledged in society at all. The result of this dynamic for most of us is that we have to pretend that we’re fine even when we’re really not.
No one knows this quite as well as those struggling with chronic pain or fatigue. In our ‘pull yourself up by your bootstraps’ economy, these individuals are at best labeled as ‘lazy’, ‘slackers’, or ‘whiny’ — and at worst, completely ignored by the rest of ‘functional’ society. They often find themselves in awkward situations that are actually incredibly painful: on the floor of the living room, catching their breath in the middle of the sidewalk, or hiding in a corner at a party.
Since these situations don’t appear panic-worthy, they can be easy to write off with: ‘Oh, I’m sorry you’re feeling bad.’ But people who are struggling physically don’t need sympathy, any more than they need a compliment. What they do need is someone to sit with them. Or someone to help with the laundry. Or someone to just hear out how frustrated they feel in that moment that their body can’t do what they want it to do.
We all have the best intentions for one another, but if I’ve learned anything from being sick, it’s that intentions are not enough. How far out of your way would you go to help a friend? If they asked, would you vacuum their carpets, or pick up their groceries for the week? If not, why not? And what kind of a society to we create when we opt out, ever so gently, with a ‘maybe next week,’ or a, ‘someone else who is less busy than me can probably help him out’?
As the holidays also illustrate for many, we have become far too isolated and individualistic for our own good. We don’t yet know how to care for one another, even if we weren’t too busy caring for ourselves. What would it be like to live in a world where people created enough free time for themselves so that when someone they love is in need, they can be there for them? We are not there yet, but this is the world I aspire to create.
I want a community that actively takes care of its members’ needs. I want doctors who have energy and time to take care of the whole person in front of them. And I want beauty and health to be fused together in the eyes of our society. Among other things, these are the remedies that I believe will help us heal.
Here’s to a season of fullness. May you be well and happy and whole.