Article by Stephanie Foo.
Stephanie Foo is a writer and a journalist working on a book on what it’s like to recover from complex PTSD. She has worked as a producer at This American Life and Snap Judgment, and her stories have aired on shows like Reply All, Radiolab, and 99% Invisible. She is also a 2019-2020 Rosalynn Carter Mental Health Fellow.
For the first time, it seems, the entire world knows what it’s like to live inside my head.
I’m in line outside a grocery store. A woman plucks an apple from the sidewalk bins, then turns to us and asks, “What’s going on?”
“Only 10 people in the store at a time,” a gentleman wearing a mask responds.
Her face darkens in fury, and she hurls the apple back before storming off.
I am unsurprised. Everywhere I turn, I see expressions of anger, sadness, and fear. People skitter, paranoid, away from anyone who passes them on the sidewalk. Online, I witness a man unboxing 25 pounds of heirloom beans, while people who’ve lost their jobs sob about not being able to get through to the unemployment office. Even friends with jobs lament their inability to work, because does advertising or teaching or editing a video about cool cars mean anything anymore? My most seemingly well-adjusted friends show up to our Zoom calls in bed, puffy-eyed, obsessive about the future.
I recognize this behavior.
For the first time, it seems, the entire world knows what it’s like to live inside my head. I have complex post-traumatic stress disorder, a form of PTSD that occurs from being subjected to trauma over and over again for years. Symptoms include trouble regulating one’s emotions, difficulty trusting others, and bouts of aggression, anxiety, and depression.
It’s a weird flex, but even as everyone around me posts about their panic attacks, I’m strangely calm these days. Turns out I’m an old hand at dealing with world-collapsing terror. I’m not disappearing into food or Netflix binges. Things that used to bother me, like tersely worded work emails, don’t faze me at all. I’m looking at scary things in the face and processing them by deciding which parts are reasonable to be frightened about and which parts are okay to let go of. Then I go about my day. I’m actually being pretty productive.
And I am finding myself uniquely equipped to help others who are struggling. Because of all the hard work I’ve done over the years learning to deal with my fear, I’m shockingly emerging from this as a valuable resource. I used to think my complex PTSD was a disability. In crisis, I’m recognizing that it is a superpower.
Lots of people who’ve experienced mental illness and trauma are in excruciating pain right now, I want to be clear. Social distancing may be triggering them or distancing them from ways they were able to cope: with friends, exercise, even AA meetings or in-person therapy. I don’t want to minimize their real, legitimate pain. But other, usually tender individuals are marveling at their ability to cope with a pandemic with comparative grace.
Part of our odd success may be because we’re used to this. We’ve dealt with everyday terror in our brains and bodies for years, and we pushed through to hold down our jobs, go to back-to-school night, make birthday cakes. And part of it is something else, a feeling that is harder to name but deeply healing. It is a long-awaited respite from shame.
It’s the summer of 2018, and I am supposed to be having a meeting with a hotshot businessman, but he is running quite late. I should be sitting in the fancy cafe, which serves mostly coffee but still has cloth napkins and leather chairs. But instead I am pacing outside, calling my boyfriend over and over. I am convinced he has killed himself.
This is nuts. I know this is nuts. We had a small fight that morning, and now he isn’t picking up his phone. Not exactly indicators that he must be dead. And yet. He always picks up. So I call. And call. Eventually, I hear his disoriented voice on the line. “Hey, what’s up?” he says. “I was taking a nap.” Embarrassment floods me. Oh, it’s fine, nothing, I say, okay, and I hang up. I take a couple of big breaths, and the businessman shows up. I smile brightly and grasp his warm, dry hand.
That’s my C-PTSD in action. And even though an incident of this magnitude is rare, it does make me catastrophize over small things. For a long time, I thought this was everyday anxiety and depression. But when I was diagnosed with C-PTSD at 30, I recognized I had something much more, well, complex.
Complex PTSD can occur when people are exposed to repeated trauma. Those likely to be diagnosed include prisoners of war or people who’ve experienced domestic abuse — my case was caused by child abuse and neglect. After I was diagnosed, the symptom list I Googled read like a biography: the tendency to trust the wrong people, the dismal self-loathing, the unhealthy relationship with one’s abuser. Altogether, the textbook definition of C-PTSD conjured an image of a very specific kind of person — cruel and unpredictable, exhausting to care for. They are far more likely to have alcoholism or addiction. They often can’t hold down jobs, are violent and impulsive. One book I read actually called traumatized people “a burden to themselves and others” and “a minefield many would prefer to avoid.”
This explained everything. I thought about all the times I had freaked out about small things and texted or called or knocked on people’s office doors, looking to them to help soothe me. They were calm. I was the messy burden. Because I didn’t see the world correctly, the way everyone else did. Everywhere I looked, I saw threats and fear and conspiracy where everyone else saw shadows.
Desperate, I dedicated my life to healing. I did yoga, hallucinogens, EMDR, saw a psychiatrist and four different therapists, meditated, talked to scientists, and wrote about all of it. I became a better listener than I was before, better at self-regulation and relaxation. I summoned a foundational, rewarding trust for my loved ones I never knew I could possess. I was happier. Still, whenever I slipped up and snapped at someone or had an anxious spell, a blanket of shame weighed on me, pulling me down to square one.
“There’s a difference between pain and suffering,” my therapist, Jacob Ham, told me. “Pain is the legitimate, healthy feeling you should experience after a loss or a mistake. Suffering is the shame that you put on top of it, for feeling the pain in the first place.”
“Yeah, but now I know I’m not supposed to feel the suffering, I feel extra suffering for feeling the suffering,” I returned. He rolled his eyes at me.
And then Covid-19 happened.
The first thing I noticed was that I went to the store before anyone else, so early that the checkout lady gave me a strange look as I hauled beans and pasta onto the conveyer belt. I got toilet paper when it was still on the shelves (a moderate amount, don’t worry). I started educating everyone in my household about proper safety protocols and wiping down our door handles. My family members sighed at me skeptically when I filled the basement with frozen waffles and canned tomatoes. But a few weeks later, when the hospitals started to overflow in our neighborhood, they were fully on board, and maybe even a little grateful. They certainly appreciated the waffles when bread was out at the store.
My therapist used to tell me that PTSD is only a mental illness in times of peace. Our bodies and brains are consistently attuned to war, so we look paranoid or hypervigilant in peacetime. But in times of crisis, PTSD is an incredible survival mechanism that our genius bodies created to help us adapt.
So in pandemic times, I’m not hypervigilant. I’m responsibly vigilant. My C-PTSD is helping keep my household safe.
I’m not the only one who’s experiencing this. I kept hearing from friends who struggled with other conditions like anxiety or OCD, who told me they too were surprised by their own level of chill. So I reached out to Dr. Ham to ask him about it. “Some people thrive in this situation because their symptoms, which were previously maladaptive in a ‘normal’ world, suddenly become advantageous,” he replied. “If you’ve always been suspicious of strangers, and felt isolated from others in some deep psychological sense, well, now that can be adaptive; everyone else is doing it. If you’ve had a germ phobia that was maladaptive, well, there’s no limit to how adaptive it is now!”
But I’m not feeling more stable just because I have a panic response that’s functioning well. That would be selling myself short. I’m also doing well because I’ve worked extremely hard to tame that response over the past couple of years, and that work is finally paying off. I’m no longer the one calling my friends crying and asking for comfort. I’m the one teaching friends how to find a therapist to Zoom with. I’m the one validating their feelings and telling them to be gentle with themselves, explaining the brain’s panic response and how that relates to what they are experiencing. I’ve had a lot of practice. I’m learning that in my long journey to heal from C-PTSD, I obtained valuable resources that it’s my responsibility to share. Turns out, I’m not a burden. I’m not a bad person. I can be a rock.
I still have days when the news is overwhelming and I sit at my computer sobbing, wondering how to mourn a loss of this breadth. But now more than ever, I feel capable of applying that sensitivity and compassion to my feelings. It’s not weak to be upset about thousands of people dying all around me, I know. It’s not paranoid to worry about what the world will look like a few months from now. Which brings me to the number one reason that I think I’m feeling better during this pandemic: I’m feeling the pain, but I’m not feeling the suffering anymore. There is no extra layer of shame. Because everyone else knows exactly what I’m going through, too.
“It’s so lonely having C-PTSD, and usually the reasons why you have it are private, personal, and intense,” says Susan, 33, who asked that her last name not be used to protect her privacy. “A big struggle my whole life is feeling alone in having these feelings.” Her parents struggled for years to understand her mental illness. But while being quarantined, they expressed feeling helpless, depressed, and panicked. Yeah, Susan told them, That’s what it’s like to be me all the time. And something clicked.
“Even though they don’t understand it entirely, they’ve come closer to understanding it. And that’s an experience I’ve struggled for decades to convey to them,” she says. “It’s not something I would’ve wished on anybody, but being able to articulate my past experience in ways where I feel understood — it reduces a lot of shame.”
Shame, self-punishment, and negative self-talk keeps us feeling isolated from others and elevates the brain’s already activated panic response. For me, the added layer of shame sometimes kept me triggered for days instead of hours. Without shame, C-PTSD is a force. Depressive moments are hurdles throughout my day, but I use calming techniques and clear them. Then I can see C-PTSD’s strengths: empathy, kindness, love, good advice, an ability to calm those in crisis.
So here’s my advice to the rest of you, those who find yourselves in our shoes for the first time: You’re not losing your mind. Your brain is simply trying to protect you. Fear floods your brain with stress chemicals, which prepare you to run or play dead or eat more. These also reduce activity in your prefrontal cortex, the part of your brain that processes logical thinking, decision-making, and moderation. That’s why you may find yourself acting erratically, covered in Cheeto dust.
Basic mindfulness techniques can reduce the amount of stress chemicals your body produces and shut off the part of your brain that keeps repeating negative narratives. There’s evidence that shows that reading bad news exacerbates these responses, so if you can, limit your input. And reach out to others for help. Maybe even us. I’m happy to be able to say to you: Needing help doesn’t make you a burden.
People talk about “after this is all over,” if and when that ever is. After this is all over, we’re going to eat so much restaurant food. We’ll throw huge parties. And we won’t be alone and afraid anymore. Which means that people with mental illness might go back to being odd, jumpy ducks.
Of course, more of us might be anxious than before Covid-19 struck, because it may have triggered difficult things in many people. Suicide hotlines are overwhelmed. A study in China reported that up to half of health care workers were experiencing mental health issues. Essential workers probably have struggled as well. Domestic abuse cases have risen worldwide.
These traumas don’t just go away in the light of day. They’ll take time to heal.
So I hope that enduring this terror will allow society to empathize with what those who struggle with mental illness feel like. I hope it will allow us to destigmatize mental illness and see the value in mental health care. I hope it recognizes that overactive brains have value in trying times.
And I hope that some of us with anxiety, OCD, and PTSD remember a time when we were powerful. I hope that when we cure Covid-19, we are also able to finally cure our shame.