The worst thing

I want to tell you about the worst thing I’ve ever been through.

It wasn’t diabetes, in case you’re wondering. But it began in a similar place. Like diabetes, the worst thing I’ve ever been through started in a doctor’s office.

It was seven and a half years ago, when I was in graduate school at NYU, and I was taking advantage of my student healthcare by visiting one of the student medical centers.

Ironically, even though it kicked off the worst phase of my life, today, I cannot for the life of me remember why I went to see that doctor in the first place. She was a gynecologist, so presumably I was there for some minor gynecological concern. I was newly in a relationship; perhaps I wanted to talk about birth control options?

Ultimately, it didn’t matter what brought me into the office. Because I left with a very different set of priorities.

There is no chance in the world that this doctor remembers me today. I remember her, though. I will never, ever forget her. To me, she was pretty major. She had an indirect but profound influence on kicking off the worst phase of my life. But to her, I was just one of hundreds of students she saw that month; I was numbers on a chart that she had to work her way through. I was a teachable moment.

I think a lot about this doctor. I hate her. Seven and a half years later, it’s hard for me not to think about her without getting furious on behalf of my seven-and-a-half-years-ago self. Maybe I’m overreacting; giving her more credit for this phase of my life than she deserves. But that’s the thing about suffering: it’s really, really hard to suffer without an enemy. And when it comes to the worst thing I’ve ever been through, she is as close to an enemy as I can find.

Let’s set the stage: I’m sitting on an exam table. I may be in a gown, or maybe I’m in my clothes. I’m guessing I was in a gown: adds to the feelings of vulnerability and discomfort. I’ve been waiting a while, sitting there and feeling my thighs press together and my leg hairs goosebump up because I’m cold.

Without warning, the door opens and she comes in, followed by a younger woman who is about my age. The doctor is probably in her 40s, with a faux-cheerful attitude that nonetheless makes it clear she is not interested in, nor does she have time for, any of my questions or concerns. Both the doctor and her follower wear lab coats.

“I have a student with me today,” she announces as the door clicks closed. Even today, seven years later, I’m uncertain as to whether I could have requested the student not be there. Regardless, at the time, what I thought about a woman my age sitting in on my private consultation with a doctor was immaterial.

She probably introduced herself. She may have even addressed the concern that brought me in there in the first place. I honestly don’t remember, because what I do remember is so humiliating it kind of obliterates any normal moments from that interaction. What I remember is this: her pointing to my neck and chin, then turning to the medical student.

“See??” she said. “The dark hair. That’s what you look for.”

The medical student nodded, interested, while I clutched my neck defensively. Why were they ogling my neck? What were they talking about? What did neck hair have to do with anything? And why did I feel distinctly like a zoo animal or a participant in a freak show?

After exhibit A (my neck) was sufficiently examined, she finally addressed me. She may have even made eye contact.

“You have PCOS,” she said. “Polycystic Ovarian Syndrome. We’re going to put you on birth control, and you have to lose weight. Just do Nutrisystem.”

I have to pause right here, kind of like I used to do with the initial diabetes posts, for a bit of medical context:

PCOS, or Polycystic Ovarian Syndrome, is a “hormonal disorder” or imbalance. In my experience, it’s not especially well understood. Women with PCOS may have very long cycles (or they may not). Their ovaries may develop many tiny follicles, or cysts (or they may not). They may be overweight (or they may not). They may have acne (or they may not). They may have excess facial hair (or they may not). They may have excess of male sex hormones (or they may not). They may fail to ovulate (or they may not). As a result of the excessively long cycles, PCOS can often cause fertility issues. Excess male androgens may exacerbate weight gain or acne or any of those other uncomfortable, embarrassing symptoms.

According to the Mayo Clinic, there’s no one test to definitively diagnose PCOS. Doctors often diagnose based on a patient demonstrating two or three of the major symptoms—high androgen levels (diagnosed by blood test), irregular periods (diagnosed by taking a thorough medical history), or cysts in the ovaries (diagnosed by transvaginal ultrasound). For some doctors, one those symptoms is enough for diagnosis, especially when coupled with some of the additional physical symptoms (acne, excess facial hair, obesity, etc).

This doctor did not ask me about my period, whether or not it was regular. She did not take any blood to measure hormone levels, nor had my blood been drawn prior to this appointment. She certainly did not do a transvaginal ultrasound. Instead, she saw that I was overweight, and crudely pointed out the dark hair on my neck to her student. Based off these two physical symptoms, she diagnosed me with PCOS, and ordered birth control and weight loss.

“Just do Nutrisystem,” she said. I will never, ever, ever forget that. Like it was so fucking simple. Just. Do. Nutrisystem. 

Of course, at the time I didn’t understand the criteria she used to diagnose me. I also didn’t understand what PCOS was; she didn’t explain it to me. I didn’t feel anything in her presence except blinding shame, shame so powerful it kept me from asking any follow up questions. I just wanted that visit to be over; I wanted her out of there and I wanted her to take her perfectly beautiful medical student with her. I wanted to leave that office and find somewhere I could cry without being observed.

I’m not embarrassed that I didn’t speak up in that appointment. I was well trained to obey doctors blindly and had decades of being shamed by them to reinforce that training.

I am embarrassed, however, that I did what she said. I followed each of her orders blindly and devotedly, because I was committed to the idea of my 6 week follow up with her being different. I would be thinner! I wouldn’t have disgusting facial hair (****PS, I don’t have disgusting facial hair. I have dark sideburns, because I am a dark haired woman. She made me feel like the fucking bearded lady****)

No matter what, I would make this judgmental stranger proud!

So I ordered Nutrisystem. Once a month for two months, a huge styrofoam box arrived at the doorway to my apartment, filled with the processed, frozen foodlike substances I was meant to eat instead of food. And the calorie deficit worked! I dutifully lost about 25 pounds in that period.

I also started birth control. I remember distinctly standing in the bathroom of an Au Bon Pain and inserting a small plastic ring into my vagina, feeling a strange combination of disgusting and hopeful. Maybe this would solve my problems.

Spoiler alert: it didn’t. Because if you recall, I started this post by promising the “worst thing I’d ever been through.” And that started the next morning.

The physical symptom hit first: nausea. I don’t know if it was birth control that caused it, or the massive amount of frozen, processed food I started eating, or general anxiety, but pretty much right away I felt a low-level, 24/7 nausea that persisted despite what I ate, what I did, how I felt, where I went.

Like most people, I have a bad relationship with nausea. It makes me anxious. Nausea 24/7 understandably made me anxious 24/7, which probably, in retrospect, made the nausea worse, which made the anxiety worse, which made the nausea worse, which… you get it. It was fucking awful.

I wish I had stopped the Nutrisystem.

I wish I had stopped the birth control.

I wish I had reached out to that doctor and demanded to understand the criteria with which she diagnosed me with PCOS. Demanded to understand why birth control and Nutrisystem were my best options. Demanded to see a different fucking doctor.

Unfortunately, I didn’t do any of those things. I just kept trucking on, eating my processed food and replacing the plastic ring every week.

And the anxiety built, and the nausea didn’t go away, and soon, within the span of a few weeks, something much, much worse began.

Depression.

I know its name now; at the time, I had no idea what to call it. It was nonstop, horribly persistent nausea. It was shaking for no reason, wanting to be in bed, feeling terrified and sorrowful at first, and then dead, and dead, and deader until I felt the worst feelings I’d ever felt. Feelings no human should feel; feelings that aren’t even feelings. Feelings that defy description.

I am a writer. I describe things for a living, and yet, I cannot accurately describe depression. The evil of depression is that it locks you in, isolates you completely from everyone and everything, keeps you alone and unable to connect with others. Connection with others is truly our salvation as people. When that is severed, we are lost.

I cannot describe depression to you, but I will try. Depression is personalized: it finds out your weaknesses and tailors itself to those. My depression was unlike anyone else’s; it is amazingly customizable. Perfectly customizable. It is 24/7 nausea. It is a despair so profound it’s like being lost in space. It is finding a salvation in the few moments after you wake up but you’re not fully conscious yet, and you float in nothingness and it is salvation, because when you remember (too soon!) who you are your pulse quickens and you feel nauseated again and you want to die.

My depression convinced me that there was one absolute truth about the universe: that nothing mattered. And anyone who felt differently was wrong, because nothing mattering was the absolute truth of the universe.

I used to lay in my bed, feeling nauseated, and think about my apartment building. One by one, I’d imagine going into each and every apartment.

Nothing matters in this one. Nothing matters in the next one. Nothing mattered in the one above that, or next to that.

When I finished exploring each apartment in my apartment building, I was in the apartment building next door. Depression led me by the hand, pushed open every door. “Nothing matters in here,” it told me, smiling. It pushed past families eating dinner and couples having sex and children dreaming, smashing them to bits. “They don’t matter,” it whispered, and I knew it was right.

When we’d finished exploring every single apartment in every single apartment building in New York City, we went house by house through the suburbs. When I was sobbing and begging it to stop, it gently guided me through hospitals, into operating rooms. “This doesn’t matter,” it whispered, making the hairs stand up on the back of my neck as I watched a doctor perform a heart transplant. It took me into office buildings, into churches, synagogues, temples. “Pointless. Meaningless.” Every night it took me from my bed around the city, around the country, around the world.

“You can keep looking as long as you’d like,” it told me, perfectly confident in itself, perfectly confident. “You’ll never find anything that matters.” It wasn’t long before I knew it was right. And I wanted to die.

I have spent six and a half years struggling to articulate depression. The above description is the best I can come up with, and it’s horribly, horribly inadequate. It’s only a tiny decimal place of the actual experience of living in a Major Depressive Episode (as I was later diagnosed with).

And you know what the truth is? The truth is, I’m happy I can’t accurately describe depression to you. Sitting here today, on my couch, seven-and-a-half years later with my dog next to me and a candle burning on the coffee table and a tiny human growing inside my belly, I am millions of miles away from that dark place, and unable to access the truth of those feelings. Good. Keep them away from me, forever, never, ever, ever let me feel that again.

I did not attempt suicide, but I wanted to die. I just wanted the despair to end so badly. I’m profoundly grateful that I was able, despite the insane thing happening to me, to do the one thing that saved me: ask for help. Honestly, I begged for it. From anyone and everyone around me. Some primitive survival instinct kicked in; some tiny part of me recognized my only chance was to throw myself at the mercy of my friends, my family, and any medical professional willing to listen.

Fortunately for me, NYU does not mess around when it comes to mental health, and no sooner had I walked into the mental health offices than I was talking to someone who got me to understand that I needed prescription help, and fast.

The Prozac helped. My family helped, my friends helped. I stopped setting goals of writing plays and getting jobs and Accomplishing Stuff. My goals became: survive this day. Survive this hour. Or, in the darkest moments: survive the next 10 seconds. Sleeping helped, as did watching distracting, bad TV. Stefan helped: we’d just started dating and he was an absolute rockstar. (In case you’re wondering, yes, he’s been through the RINGER with me…) He would do nothing when I needed to do nothing, not judge me when I started crying for no reason. We went on walks when being in the apartment was too much to handle; he held me when moving around was too much to handle. One of my only good memories from that time is going to a late-night showing of What To Expect When You’re Expecting because it was playing and we needed to do something, and finding, for a few minutes during that movie, a kind of gentle relief, a small escape. (Even today, stumbling across that terrible movie on TV still makes me feel comforted.) I finally stopped the birth control, and when I could eat again (which took a while, given the 24/7 nausea), I started eating real food and not nutrisystem crap.

I firmly believe that birth control incited a hormonal wave that started my Major Depressive Episode. As in: it was the inciting incident. Which is not to say that this post is meant to be anti-birth control propaganda: I also firmly believe that it’s the right choice for many women and works wonders in the right situation. (Incidentally, there’s also research that indicates being in a calorie deficit can exacerbate depression. I’m sure it didn’t help me.)

Maybe it wasn’t the birth control: I will never know. I do know that the psychiatrist at NYU suggested I avoid hormonal birth control in the future, and I’ve successfully heeded her advice since then. She also told me that having one Major Depressive Episode increases the chances you’ll have a second, and it’s something I have to be vigilant for for the rest of my life.

I’m thinking about this these days, because, quite frankly, I’m terrified of postpartum depression. I’m sure having been depressed raises my odds. I’ve talked to friends and family who have had kids, and am a little appalled at the lack of postpartum care for moms. You’d think, given the incidence of PPD, women would be followed-up to see how they’re doing, mentally, emotionally. But apparently: not really the case. You have a baby, and then… you’re on your own.

I’m lucky. I’m back to 100%. The crawl out of depression was slow and torturous. It took about a year until I felt like myself again. (And was ready for the next challenge life would bring me.) But I can say with certainty that nothing I have been through since holds a candle to the absolute eclipse that was depression.

The other night I had what I am convinced was the worst low I’ve ever suffered. I came to in the bathroom, with all the bedroom lights on, drenched in sweat. My hair was actually matted, damp, because I was sweating so bad. My heart was going POUND POUND POUND POUND POUND POUND POUND at about a thousand miles a minute and I didn’t know who I was or where I was and I was having terrible, horrible thoughts that I don’t care to repeat here. Mickey was up, staring at me, and I swear to you he looked terrified. He probably brought me out of it; I don’t know. It took at least 30 minutes to realize where I was and who I was, and when I did, I noticed the empty juice box on the bedside table. Some instinct must have caused my body to drink it after the low took over. I’m convinced that drinking that juice is all that kept me from slipping into a diabetic coma. (Pregnancy control is a real bitch, people.)

The next morning, reflecting back on that night, I thought to myself, “That was the worst.” And then, automatically, I corrected myself. Because it wasn’t the worst. Depression was the worst.

Why am I posting this today? Great question: I find myself at the end of this post feeling anxious and uncomfortable and wondering if I shouldn’t delete it.

I’m posting this because I’m worried about PPD. Because I’m thinking about doctors and the effects they have on our lives, so often without realizing it. Because I’m feeling grateful to be alive after that rip-roaring low the other night, and every time I feel grateful to be alive, I feel a second burst of gratitude for the doctors, medicine, family, and friends that helped me survive the worst thing I’ve ever been through.

But I think mostly I’m posting it because I’ve been thinking about it recently. And I want you to know that if you have ever struggled in this way: I see you. I don’t understand what you have suffered — I can’t, that’s the evil of mental illness — but I see you. And I promise you that if you are drowning, you just have to reach out your hand and let someone catch you. LET PEOPLE HELP. LET PEOPLE HELP. LET PEOPLE HELP.

Ask for help when you need it. Because, and I believe this with every fiber of my being: connection with others is our salvation as people. It’s everything.

Much love to you all tonight,

Jessie

PS – Two years later, a few months out from being diagnosed with Type 1 diabetes, I casually mentioned to my endocrinologist that I had PCOS. She stopped me: “When were you tested?” I explained I had never been tested, but my obvious dark facial hair and weight struggles had led to the conclusion. She gently suggested we test my androgen levels at specific points during my next cycle to see if the diagnosis was valid. And what do you know — my hormones were normal. My cycle, at that point, was totally normal. Years later, I was able to get pregnant. Being overweight and having dark hair, turns out, is not actually enough to justify a PCOS diagnosis.