Why I’m Grateful People Are Taking Illness More Seriously

If you have an illness that no one can diagnose, no one can treat, and no one can understand, then you know suffering. And you did long before COVID-19 came along.  

And yet, if you have a difficult-to-diagnose illness, you may also be very familiar with a very particular, very predictable response in the life of a woman with an invisible illness: The growth of a second self. 

A pretend self that is not in a state of severe trauma. An exoskeleton of strength, and perfection, and heroism. 

Even if everyone around you knows that you are unwell, you are still expected — and expect yourself to be — a “wellness warrior.” Valiantly fighting the good fight. Resilient to a fault.  Tireless, impressive, and utterly independent. 

I know. In 2003 I developed ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) and severe chronic pain, and in the intervening 17 years I have perfected the art of the second self.  

It’s a dark art – hiding what is really happening, often out of shame, out of fear, out of just wanting everything to go back to normal.  

And reflecting on this second self has been eye-opening, here in May of 2020. Because this reaction, this erasure of suffering, is certainly not the collective response we are having to COVID-19.

It’s not what is happening now that our trauma is shared. 

Now, everyone is talking about it as a real nightmare, as real suffering, as real pain. Most of us are not pretending otherwise.

Indeed, everyone I know is telling one another to take care, to take it slow, to be kind to yourself, to give your body and your soul what it needs.  

Virtually everyone is responding with compassion.

It’s the correct response.  

I support it wholeheartedly.

But I will tell you what:

This is not what happens when trauma is not shared.

When trauma happens in solitude, or when it affects an already marginalized group, it is usually stigmatized to some degree or another — not valorized. And to get away from that stigma, we the traumatized often try as hard as we can to run from it, to lock it in the basement, and to throw away the key.  

A mistake if there ever was one, but one that makes plenty of sense in the moment.

So, looking over the excerpt from my book that you’re about to read, I feel a mix of sadness and gladness that, in this moment, the collective seems to be having the right response to trauma — at least for now.

Even if it didn’t happen for me — or didn’t happen for you, if you have a difficult-to-diagnose illness — it is good to see an example of what it could be like.  

But lest ye be tempted otherwise — dear reader, please let the following story serve as a cautionary tale.

The below is an excerpt from Sarah Ramey’s memoir, The Lady's Handbook for Her Mysterious Illness.  Ramey suffered for a decade from an illness that her doctors couldn’t diagnose. They told her it was in her head. It wasn’t. Her story is inspiring and devastating, full of sadness, hope, and humor. 

About a year into things, I grew a second self. 

It was an exterior self that I would present to the world — someone who smiled and did fabulous things and did not have a fire poker in her vagina, bladder, intestines, and spinal cord. When no one can see or understand the disease, even in a basic way, things get complicated. A woman like this is afraid of being stigmatized, so she stops talking about it. She may take significant time off, change her eating habits, take naps — and sometimes this produces real, positive change. But usually she feels guilty for taking this time for what her doctors have told her is a made-up disease, and comes back to the world with a zealous but not totally genuine zest for life— instantly burning out any energy she might have cultivated during her resting period. 

I can’t stress how typical this is. 

Indeed, three of the first mysteriously ill women I ever encountered were superstars this way: two were New York Times bestselling authors and one had sold her hugely successful Internet start-up for $30 million. All while they were sick.

I was exactly the same way — ill, yet unnaturally productive.

The four of us agreed: There simply comes a point when you decide that if it's going to be so outrageously bad on the inside, and there is no cure, you will try to create something outrageously good on the outside.

So that’s what I did.

In 2004, I was given a break. A pretty big one, actually. After months spent staring into the infinite abyss of the family couch pillows, unable to read or even sustain conversation (i.e. the common, mortal exhaustion of ME/CFS) — my mother, a doctor, went rogue and prescribed me Diflucan for a basic yeast infection I had, on the one condition that I not tell my doctors. She had suspicions that a fungal infection might be driving the whole illness — and in alternative medicine, candida, or a systemic, subclinical yeast infection of the intestines, is a common but very controversial diagnosis. In traditional Western medicine, this Phantom Fungus Syndrome is widely regarded as a condition that only kooks and hypochondriacs believe in, and absolutely does not exist.

And at that point in my journey, this poor opinion of candidiasis was just fine with me. I myself did not like to think my problem was “yeast.” Ew.

But I took the medication anyway—and lo, readers: a miracle.

After months and months of severe lethargy, cemented bowels, the foggiest brain, and extreme vaginal pain—your Sarah Ramey was raised from the dead, suddenly much better, from head to toe, within about a week. The pain receded some, the fever evaporated, and my energy started to return. I could read.

Free at last, free at last! I didn’t waste any time with the important things, and lost my virginity almost immediately.

Painful?  Oh God. 

But it was possible.  

I.

Was.

Ecstatic.

I was a nice, normal young woman again.

And this supreme enthusiasm is just as common as common can be. An average women with a mysterious illness’s (WOMI) reentry into what she thinks will be normal life as she has always known it can be characterized with phrases like “wild abandon” and “devil may care.” It is the equal and opposite reaction to months sewn into the sheets of her bed in suspended, horizontal animation.

And, importantly, she may also take up a campaign to disassociate herself from all signs of weakness. Her illness will not be a stain on her reputation. She is not a failure. And she will make sure of this, even if she has to lock certain things away — symptoms, feelings, needs — like a telltale heart, thumping in the basement. This behavior is regardless of the severity of whatever syndrome she is dealing with. One WOMI I know calls this the “boom/bust cycle,” and it is so very understandable. Because in the beginning, a WOMI has no idea what is going on, and certainly does not see her body as a temple. That concept is just not part of our culture. Her body is a vehicle that gets her brilliant head from one location to another. She is calmly aware she might be driving a lemon, but when the thing begins to show real signs of wear, she has learned to bang the dashboard and use her force of will to keep it moving—no matter what. Her answer to a sputtering car is to floor it.

And this is exactly what I did.

Given an inch, I took a thousand miles.

Immediately following my partial resurrection: 

I moved to Maine.

I lived by the ocean. 

I waitressed.

I had a boyfriend. 

I joined a band.

We toured the country. 

I seized the day.

I seized the night.

And seeing that I was doing well, I was taken off the medication after six months, because there is legitimate concern that long-term use of prescription anti-fungals is dangerous to the liver.

And then I ignored/hid/locked in the basement the signs that I was ever so slowly starting to get worse again. Because who could really believe that fungus could have anything to do with my problem?

But more than that, I was terrified of getting back on the medical merry-go-round.

So instead:

I tried to be one of the guys. 

Strong.

Tough.

Machine.

Coffee.

Beer. 

Pizza.

I would lie curled up in the backseat of our van, outside some bar in Idaho, waiting for a gig to start, praying for poop.

When sex became excruciating, I silently bit my lip.

When I was hospitalized for constipation, I told no one.

When my body started to ache and burn, I made myself join a gym.

I could not, would not go back to the mechanical, medical nightmare.

Thus: I applied instead to Columbia University’s MFA program for creative writing, and got in.

I moved to New York.

I started writing a biography of my endocrinologist grandmother. I started dating a sensitive male model.

The male model brought me offerings of feathers, seashells, and gluten-free delicacies, set before me as if they were frankincense, gold, and myrrh.

All of this seemed like good medicine. 

And yet:

I got much, much worse.

It felt like I had poured cement into my colon and put a hatchet in my vagina.

The fevers returned.

I became allergic to everything. 

And I mean everything.

I lost twenty pounds in two months, and I was skinny to begin with.

I had to give myself suppositories in the ladies’ room.

I sat in class, trying to focus on Vladimir Nabokov, John McPhee, and Virginia Woolf, closing my eyes to do quiet, Lamaze-style breathing just to get through sitting for two hours in a wooden chair.

No one knew.

I finally started going secretly to gastroenterologists, urologists, rheumatologists, by myself.

And I found myself universally prescribed antidepressants and anti-anxiety medications.

I didn’t know what to do.

Every single doctor had the same diagnosis: female sadness.

I broke under the weight of my secret and told my family, three friends, and the model.

I was embarrassed and emaciated. I was urged to drop out of school.

I agreed instead to start Paxil and Klonopin. 

Then: 

I had three energetic weeks, zooming around on some much-needed serotonin, pooping like a champion — until suddenly without any warning I fell into the blackest, bleakest hole of true, crushing depression and started to plan my own suicide, all day, every day.

I started having severe panic attacks — on the subway, in my room, at school.

I told my doctors, and my doctors told me to increase the Klonopin (a sedative) and find a therapist.

I went to a psychologist, who listened to my story from beginning to end, and all but kicked me out of her office, demanding I get real medical attention.

I didn’t know what to do.

I stopped writing about Grandma, and started writing about my vagina.

I presented this writing to my workshop. They liked it.

It was a cold comfort.

The model and I broke up. I slept constantly.

I couldn’t eat anything without my stomach blowing up like a balloon.

I had to walk very slowly.

I could no longer sit in a chair. I barely graduated.

And so:

I went on the lam.

Immediately after graduation, I moved into our family’s small summer cabin, alone.

The house sits at the end of Solitary Lane. 

The porch overlooks Solitary Creek.

This is true.

Just before leaving, I had met a yoga teacher named Alejandro del Sol — my first encounter with yoga — who had given me a gentle practice I could do on my own. I had also met my first fellow WOMI by this point, the secret twin, who advised me to attend to my gut flora, and go on a paleo diet (no sugar, no grains).

These were two blessed, much-needed rays of Sol. 

Retreating into Solitary, I did exactly as they said, every day. 

And I started to get a little better.

At my twin’s urging, I started taking herbal antifungals. 

And I got a little bit better.

At Alejandro’s urging, I planted a small garden.

At everyone’s urging, I stopped taking the antidepressants. 

The suicidal thoughts vanished.

And slowly, I got a little better. 

And then a little better.

But I was still extremely isolated.

And I was definitely still sick, just a bit better.

I took up meditating. 

I took up prayer.

I prayed for something, anything, to come in and save me from the invisible monster.

And then one day, after very slowly improving over a few months, a friend called and told me about a job opening at Barack Obama’s campaign headquarters in Chicago. It was August of 2007 and they needed a blogger. They needed someone who could write fast, and move right away. It was ludicrous for someone in my situation to apply. I applied.

Two weeks later, I had an apartment in Chicago, and an average readership of 25,000 people a day.

I absolutely loved it.

I wrote about hope and change every day.

I had brilliant colleagues, straight off the set of The West Wing.

My own hope engine came back online, and my wasted heart started to beat.

We worked sixteen-hour days. We worked seven days a week. I was happy.

I met Barack Obama.

I edited a few lines of his speeches.

I read the “Yes We Can” speech in a Word document the night before it came out.

And:

I was unbelievably sick.

The chasm between public me and private me was immense.

I had to wake at four-thirty in the morning to give myself the first of two morning enemas, stretch my pelvic floor, make all of my own food and laxative tea, do yoga, pray, and meditate — just so I could keep myself functioning enough to do the job.

I couldn’t wear pants, and had to sit at a forty-five-degree angle on my thigh to keep all weight off my pelvis.

I ached like I was 128 years old, not 28 years old.

I cried every day in the campaign headquarters bathroom, crouching in the stall.

I slept in my car on breaks.

And I kept it all a secret.

I loathed keeping it a secret. I loved these friends.

I loved my job.

My friends and my job loved me back. It didn’t matter.

By the Iowa caucuses, I was so crippled from pain and exhaustion that I could barely walk to the bathroom to cry.

I was flown home for emergency intestinal surgery and could not go back to Chicago.

My emergency laparoscopy revealed nothing except a “flaccid colon.”

A flaccid colon, it turns out, is nothing to worry about.

I saw more specialists. I was tested for everything, again. I was told everything was normal, again.

I was told I could either Botox the muscles in my vagina, which probably wouldn’t do a whole lot, or I could start making preparations for dealing with my imagined condition permanently.

Writing this now, I want to reach through the screen and pull my younger self close.

I am so, so sorry. I didn’t know.

From the book The Lady's Handbook For Her Mysterious Illness by Sarah Ramey. Copyright © 2020 by Sarah Ramey. Reprinted by arrangement with Doubleday, an imprint of The Knopf Doubleday Group, a division of Penguin Random House LLC.