I Have Medical PTSD From My Chronic Illness—Here's What I Want You to Know
Writer Tessa Miller was diagnosed with Crohn's disease in 2012, and after nearly a decade of hospitalizations, medications, and intrusive scans and tests, her disease was under control. But recently, another medical emergency triggered her illness-induced fears.
Two aliens live inside me, one on each ovary. They're called teratomas—derived from the Greek word for "monster"—and are germ cell tumors that grow teeth and bones and hair. Doctors saw them on a CT scan and sonogram I had in the emergency room a few weeks ago; one is the size of a small orange; the other, a small plum. They cause a constant, heavy, dull ache that radiates between my hip bones, and they've made my menstrual cycle irregular (some months I get my period twice for eight or nine days at a time).
The good news: My teratomas are, despite their buck-toothed freakishness, benign, but they can't stay inside of me. The longer they do, the more they'll grow (that's what teratomas do: grow), and the likelier they are to rupture or irreparably twist an ovary. There's also a slight chance they can become malignant or cancerous, so they have to be removed.
The surgery is laparoscopic, so three tiny incisions (one through my belly button and one over each ovary) are all that's required. There are risks, like a nearby bowel getting accidentally punctured, but the overwhelming majority of these surgeries go routinely. In the grand scheme of things, this is no big deal compared to what my body has been through. Still, I've been putting it off for years since they first showed up on a scan, banking on them staying small and painless (even though I was told to pursue surgery sooner rather than later). I didn't want another reason to be poked and prodded and scanned and tested and inevitably, cut open. If I could ignore those things growing on my ovaries, I thought, then I could maintain some autonomy just a little while longer.
See, I've been giving my body over to doctors for nearly a decade. In 2012, I was diagnosed with an incurable inflammatory bowel disease (IBD) called Crohn's that triggers my immune system to attack my digestive system. It causes bleeding and ulceration throughout my digestive tract, diarrhea, vomiting, dehydration, malnutrition, fistulas, bowel perforations, blockages, fissures, abscesses, anemia, joint pain, fatigue, and something called toxic megacolon (it sounds like a death metal band, but it's actually when the colon expands with gas and stool to the point of rupture). Most folks with my disease require surgery at some point—be it bowel resectioning or removal—and many live with temporary or permanent ostomies. IBD also increases the risk of digestive cancers and other chronic illnesses (cardiovascular disease, respiratory disease, kidney and liver disease, arthritis) and the drugs that treat it can trigger significant side effects, like drug-induced lupus, psoriasis, and even cancer. It's an unfair, heartless, and often debilitating illness.
Since being diagnosed at 23, I've been hospitalized more times than I can count or care to remember—a few days here, three months there. I've taken more medications than I can list here, and I've dealt with their sometimes brutal side effects. I've had countless scans and tests, seen numerous specialists, had three fecal transplants, and spent hours fighting with insurance companies over everything from hospital bills to medication approvals. Through all of this, I've put together a team of excellent doctors who manage my care. My disease is so well controlled now, after years of constant flare ups—thanks to my doctors, an immunosuppressant infusion medication, dietary tweaks, and lifestyle changes—that my last hospitalization was nearly four years ago.
On December 1, that changed. I'd been violently ill for days with what I suspected was a kidney infection (it was). I was trembling from dehydration and the pain creeping up my back was beyond what I could control at home. I knew I needed emergency intervention. But the thought of going to the hospital—a place where I'd received life-changing diagnoses, where I spent months languished with flare-ups and life-threatening bacterial superbugs, where I had my symptoms dismissed by doctors, where I wondered if I'd ever again see a view different than the brick wall outside my hospital room's window, and now, a place overburdened by COVID—was crushing. While my husband pulled the car around to the front of our apartment building, I sat on the edge of our bed and full body sobbed.
There's a name for this overwhelming fear—medical PTSD, or illness-induced PTSD—and when my health is manageable, I almost forget I have it. This kind of post-traumatic stress is criminally under-researched, but according to the data that does exist, affects up to 25 percent of people who go through a life-threatening medical event (it's prevalent in those who've had cancer, experienced a stroke, and dealt with digestive diseases like IBD). According to a Columbia University study published in PLoS ONE, people who felt acute danger during their medical event or those who feel little control over their ongoing medical condition are more likely to experience PTSD. People with chronic illnesses deal with an especially challenging version of this, as a lifetime of flares and remissions can cause internal PTSD triggers, like abdominal pain or trouble breathing. In "regular" PTSD, triggers are usually external, so therapy focuses on distance from the traumatizing event and safety in the present moment. But when the triggers come from your very own body, it can be more difficult to feel safe.
Some of what we know about illness-induced PTSD comes from adult survivors of childhood cancers. Research out of the University of Pennsylvania says that 20 percent of childhood cancer survivors have ongoing PTSD, the symptoms of which, in some patients, went undetected for years or even decades. And this is important: Symptoms of medical PTSD, if left untreated, can grow stronger rather than diminish over time. They include preoccupation or obsession with the medical event(s); trouble sleeping and nightmares; going out of your way to avoid people, places, and situations that remind you of the event; feeling constantly on guard; feeling numb or detached from reality; and feeling guilty, as though you could have done something to change the event. Medical PTSD becomes dangerous when, in an attempt to forget what happened, patients avoid taking necessary medications or seeing their doctors.
After a three-month-long hospital stay in 2015 that brought me the closest to death I've ever been, my PTSD due to medical trauma showed up as insomnia, hypervigilance, heightened anxiety, and replaying moments where I thought I might not live. The first time I walked past the Brooklyn hospital where I'd been a patient, several months after being discharged, I abruptly vomited all over the sidewalk. And though my symptoms weren't always so dramatic, I was irritable and afraid all of the time. I learned how to cope through ongoing talk therapy and medication, and over many months, my symptoms dissipated to a manageable level. But clearly, as my sobbing on the bed reaction proved, it's something I'm still reckoning with.
It's important to understand that medical PTSD doesn't just arise from the event itself, but also from the way one was treated during the event. If you were treated badly by hospital staff or had your symptoms ignored or doubted, that increases the risk of developing medical PTSD (that goes for most chronically ill people I know, who've been long disbelieved when they "don't look sick," and is compounded further if you're Black or trans or a woman or fat or poor). Although I have privilege (or really, power) in the ways I'm able to navigate the healthcare system—being white, thin, cisgender, insured, and most of the time, able to move freely without mobility aids—I am still afraid that I'll be dismissed or misdiagnosed.
Others aren't nearly as fortunate as I am; many have to deal with biases (sometimes overlapping ones) that greatly affect their health outcomes. Black mothers in America, for instance, are four times more likely to die in childbirth than white mothers, and Black people overall are likelier to die from various cancers (breast, colorectal, pancreatic, stomach) than white women. The COVID-19 pandemic, too, has shown that Black communities are suffering and dying drastically more than white ones. Similarly, people in bigger bodies and transgender people also face discrimination (or fear of discrimination, which is enough to keep people from seeking necessary care), which can lead to later diagnoses, progressive illnesses, and higher rates of death.
The truth is, our healthcare system, even when it functions well, is far from perfect. We're taught to not only trust doctors with the proper care of our bodies, but to trust ourselves with the signals our bodies send to us—and when your illness is invisible, those two ideas often clash. It's worth noting that doctors, too, suffer in our system. Providers are required to work long hours in highly stressful conditions, churning through as many patients as possible (by some estimates, primary care physicians spend 15 minutes or less with each patient, which leads to physician burnout and worse patient outcomes). There's also the issue of insurmountable student loan debt, with the average medical school graduate racking up over $200,000 in loans, and the unavoidable truth that patients too can be demanding, unpredictable, and downright mean. Between 300 and 400 doctors die by suicide each year, double the rate of the general population.
It's no wonder then, in a system that isn't adequately serving patients or doctors, that many of us end up with some sort of medical post-traumatic stress. And while there's no one right solution that we've come up with yet, there are ways to receive help if you are experiencing the effects of medical PTSD. Finding affordable, quality mental health support does take some legwork, so consider asking a trusted friend or family member to help you (having an advocate is important!). If you have health insurance, the easiest first step is to call your insurance company and not only make sure that you have mental health coverage, but also whether there's a limit on how many appointments you can schedule each year, which providers are in-network, and if you can be reimbursed for out-of-network care.
If you don't have health insurance or if therapy is still too costly even with insurance—a common pitfall here in the U.S.—you still have options. Online support groups can be a major help to provide a sense of community and to connect you with resources you may be unaware of otherwise. If that's not your thing, therapists will often work on a sliding scale based on your income, or they'll refer you to a junior staff member who can see you at lesser cost.
Beyond this, you can look into community health centers, Federally Qualified Health Centers (FQHCs), nonprofit therapy collectives, campus-based mental health services, and training programs where therapists-in-training give free or reduced cost sessions. You can also explore apps like Talkspace or BetterHelp, which are affordable options but may provide less frequent or comprehensive care than you require, depending on your needs. If you're still hesitant about starting therapy (I get it—I put it off for years!), books are a low-stakes place to start. Just be sure whatever you're reading—be it self-help, mental health memoir, or psychology text—is scientifically sound.
More than anything, know that you deserve to feel better, and that PTSD due to medical trauma is something you can learn to healthily cope with. There is no shame in seeking help for your brain just as you would for your body, whether that requires therapy, medication, or a combination of both.
Tessa Miller is a health and science journalist who's contributed to the New York Times, New York Magazine, Lifehacker, Medium, and The Daily Beast. Sections of this essay have been adapted from her book, What Doesn't Kill You: A Life with Chronic Illness—Lessons from a Body in Revolt, out February 2, 2021.
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