My Anxiety Landed Me In The ER Over & Over Again. Here's How I Finally Regained Control
"Can you please try to squeeze me in for an appointment?" I all but begged the receptionist on the other end of the line. "It's an emergency."
I stood on the corner of Broadway and Astor Place in Greenwich Village, on the phone with the office of an oral surgeon I had just found on Google. Sweat beads formed on my forehead and rolled down the back of my neck as I squinted into the glaring, late-July sun. Why isn't anyone accommodating me for an appointment?
This was the fifth surgeon I'd called for a consultation after I’d discovered a blister in my mouth earlier that day. I’d determined, via vicious, frantic sifting through online medical boards and forums, that the mouth sore was an advanced stage of the human papillomavirus. I was sure of it. If I didn’t get treatment as soon as possible, I would be dead in weeks.
"Oral HPV often has no symptoms," Healthline told me. "This means that people don’t realize they’re infected and are less likely to take the steps necessary to limit the spread of the disease." How did the receptionist not understand this? I was dying.
My shoulders felt heavy, my breathing strained. The tightness in my chest was incessant, pleading to be attended to. I am dying, every cell in my being screamed. Do something.
It wasn’t until a year later that I realized this instance and a slew of other panicked self-diagnoses weren’t what I thought they were—in that they weren’t physical illnesses, and no, I wasn’t going to die. So why did my experience always feel assiduously real? The real diagnosis finally came at the beginning of 2018, when someone recommended I speak with a therapist. I’m struggling with hypochondria, more recently referred to as illness anxiety disorder: a mental health disorder in which a web of intense, undiagnosed anxiety manifested itself in the form of an obsession over my health.
What is illness anxiety disorder?
Diagnosing someone with hypochondria has been unfortunately associated with a lot of stigma, so the Diagnostic and Statistical Manual of Mental Disorders coined the phrase "illness anxiety disorder" (IAD) for people whose obsession with health concerns interferes significantly with their life. IAD includes excessive worry over having or getting a serious illness despite having little to no symptoms, according to the Cleveland Clinic. Nonetheless, the thoughts are unabated and terrifying. "The disorder is not about the presence or absence of illness but the psychological reaction," the clinic states.
The health-centric anxiety that sufferers of IAD experience can be derived from trauma, abuse, generalized anxiety disorder, depression, obsessive-compulsive disorder, or other major life stress. "Anxiety is manifested in numerous ways because it is part of an individual's defense mechanisms against pain," Jack Soringer, an emergency room doctor and author of the forthcoming book A Rebel’s Guide to Anxiety and Depression, tells me. "Since we all have different brains, there are many different manifestations of anxiety, most with some combination of both psychological and somatic (bodily) symptoms."
Despite its role as a defense mechanism, I can say with chilling certainty that the anxiety, which manifests itself as obsessive health concerns and self-diagnoses, devours and swallows you whole. An example, according to Dr. Soringer, would be a panic attack that gives some people the sense that they are actually going to die imminently. "This is comprised of fear as the primary emotion and very real physical symptoms such as heart palpitations, rapid breathing (or breath holding), dimmed vision, and lightheadedness. I have seen multiple presentations of people in the ER with just such symptoms," he explains.
This disorder consumed my life for over two years, and my "sicknesses" always felt forebodingly realistic, sending me into episodes of hysteria that consumed me. I had thought myself on the verge of death more times than I can count: In college, I woke my roommate up in the middle of the night, desperately asking her to check my pulse—it was too slow, and I was at risk of hyperkalemia. Another panic attack: A few days after I got my copper IUD inserted, I was immersed in an online forum of women warning me about potential copper toxicity; moments later I had made an appointment at Planned Parenthood to get the contraceptive taken out of me. I once convinced myself I had to eliminate any source of sugar and carbohydrate from my diet immediately because it was feeding the fatal candida growth in my gut; this went on for weeks. I found myself sitting in an ophthalmological emergency room in Philadelphia with a pounding head and black floaters obstructing my vision, waiting to get test results back; I was undoubtedly certain my symptoms were caused by a forthcoming aneurysm.
The truth was that the symptoms were my body reacting to my anxiety.
"When someone is anxious about having an illness, the anxiety level goes up, the stress level goes up," Peter T. Swanljung, medical director of the General Adults Unit at Friends Hospital in Philadelphia tells Psychology Today. "That can lead to headaches, to stomach and digestive problems [among other symptoms]. Anxiety definitely can cause pain, and if you're a hypochondriac, you react to that pain in a unique way."
The cyclical problem of misdiagnosis.
If you don’t quite understand how the brain can formulate illnesses when they’re not there, it’s OK—it’s still hard even for me to understand the workings of my mind, even after doing tireless research on the subject and attending biweekly therapy sessions for over a year. It’s especially hard to wrap your head around hypochondria if you haven’t experienced it firsthand. "It's an obsession, and oftentimes people don't want to listen to someone's obsessions," Gail Martz-Nelson, a Denver psychologist specializing in anxiety disorders told Psychology Today. "'I'm terrified I have HIV, I'm terrified I have cancer, I'm terrified I have lymphoma.' People hear that and dismiss it or laugh it off. But being a hypochondriac can be crippling. It's not a joke."
My very real paranoia and fear were rarely acknowledged; my obsession shrugged off as irrationality since, physically, I seemed to be the picture of health. This is partly due to the fact that women's pain is routinely ignored, both by themselves and (more pressingly) by medical professionals. Historically, women have been disparaged from coming forward with their health concerns, as reported in great detail in a recent Medium essay from Eileen Pollack, author of The Only Woman in the Room: Why Science Is Still a Boys’ Club. Pollack exhaustively demonstrates how the medical establishment undermines, misdiagnoses, and gaslights women. For example, she cites research that’s shown how doctors and nurses consider female patients "more demanding" than male patients because they "ask too many questions and 'communicate too diffusively.'"
"Though we have come a long way since the days of Victorian medicine and women being diagnosed with hysteria, research suggests there is still a gender gap when it comes to medical treatment," Laura Albers, a certified master wellness coach by The International Association of Wellness Professionals and licensed professional counselor, tells me. "Some stereotypes persist around women being overly emotional and irrational, making it easier for some doctors to react more dismissively when a female patient comes to them in pain."
This is precisely where the misdiagnosis of hypochondriasis comes into play: "Medical professionals tend to dismiss as hypochondriacs people who visit doctors frequently, use pain medications excessively, ask for surgery, and generally act in ways an invalid would act—all of which correspond with the behavior of someone who suffers from a real disease no one believes she has," Pollack writes. This is offensive—especially to me, a woman who actually suffers from IAD—and unacceptable.
A potential IAD diagnosis isn’t permission for dismissal from medical professionals. It’s this behavior that’s seemingly heralded the modern comeback of the "female hysteria" prescription. As we push for the medical establishment to start taking women’s pain more seriously, we also need a better system in place for recognizing and sensitively treating possible IAD. For me, my hypochondriasis is my pain, and it's very, very real.
The fact that I have hypochondria doesn’t mean that I should stop advocating for my own health. No matter their diagnosis or lack thereof, women are not "difficult" for asking questions. We are each our own spokeswoman in a complicated system of frequent, unfortunate oppression and dismissal.
Albers says that women commonly tend to be more in tune with their bodies, and they notice more when they are having symptoms or when something seems "out of balance"—like an intuitive gut feeling that something isn’t quite right. But "if you are continually gaslighted about what your body is telling you, you grow less and less able to trust those signals," Pollack writes.
Just because I’ve struggled intensely with IAD in the past and more mildly in the present doesn’t mean that I haven’t learned to trust my body’s intuition when it comes to pain and to know when something’s actually wrong with my health. Just like so many women, what I need at the end of the day is to be taken seriously. To be heard.
A better care system.
My anxiety was never something that could be detected in a blood test or measured by a specific score or level or number. I was dismissed and even laughed off, over and over again—but my pain never felt like a joke: On the contrary, the obsession often overtook me like the strongest current in an ocean, leaving me flailing and gasping for air, unable to swim to shore. The seemingly broken feedback loop in my mind consumed many days of my week, interrupting me at work and demanding attention or tampering with my sleep schedule. I spent many sleepless nights wide-eyed and hypervigilant: worrying, obsessing, entirely out of control.
"Our general Westernized medical model is based primarily on blood work, lab results, and specific scores, numbers, and levels," Albers explains. "It may not always account for what a woman might notice within her own body, especially if it is subclinical, nor do those numbers often reflect genetic influences or other factors." For me, numbers and lab results simply couldn’t decrypt the crippling anxiety and heightened state of awareness I was constantly immersed in—this led to a disconnect between my concerns and doctors’ prognoses: The numbers never matched up.
Even so, I didn’t stop advocating for my health, and that’s something that can never, ever be understated. "We can only benefit when preventive and responsive care is sought out by the patient, as well as utilized and advocated for by the medical community," Albers tells me. "We need to become better advocates for our own health."
Even if you have IAD, you can and should go to the doctor if you think something's wrong—and no doctor should ever dismiss you for doing so. Yes, it’s perfectly acceptable to get several different doctors' opinions about your condition if you don’t agree with their diagnoses; many women have shared harrowing stories about how long it took for their pain to be believed by a doctor. That’s not annoying, and that’s not you being "paranoid"—that’s advocacy. Only you know your body wholly. We must demand more.
The primary care doctor that I have now has, at times, spent a full hour with me during my routine visits, looking me in the eye, listening to me, asking me in-depth questions about each aspect of my health (and not just the physical). She was the one who suggested I start on SSRIs, which was a revolutionary and inordinately necessary puzzle piece in my particular path to healing from the complicated web of anxiety, clinical depression, and hypochondriasis I was caught in.
A good health provider is someone who is willing to have a two-way conversation with you, where they're listening to you and you’re listening to them. To this day, my physician makes me feel heard and prioritized: Our relationship has been built on mutual trust—an ebb and flow of honest dialogue.
How to heal from health anxiety.
What I now know is that my anxiety-derived hypochondria is a coping mechanism for multiple instances of trauma I’ve experienced throughout my life. The illnesses that my mind constantly constructed were protecting me from things much bigger than me—events that I simply couldn’t face without having to endure intense psychological pain that would have been comparably worse than the wildest of physical diseases my mind could formulate. "Researchers aren’t sure exactly what causes a person to have anxiety or one form of anxiety over another; however, we do know there are many factors that influence your stress response, including genetics and past trauma, to name a few," Albers confirms.
As humans, says Albers, we are wired to seek pleasure and avoid pain. At one time, the response I had to stress helped me in some way, generally to avoid pain, so I continued that behavior. But as I realized that my coping mechanism was indeed toxic and enveloping my life and permeating my relationships, I began to work through the roots of my anxiety via cognitive behavioral therapy (CBT) and slowly started to understand where my very real, very scary fears were stemming from.
Yoga and meditation also played a huge part in the healing of my mind and understanding of my hypochondria-centered panic attacks. (Maybe healing isn’t the right word, though—my mind was never broken. It was simply trying to protect me, and that, to me, is extraordinary.) The last piece in managing my anxiety was agreeing, under the supervision of my primary care doctor, to go on an SSRI. This isn’t the answer for everyone, but for me, the combination of CBT, yoga, meditation, and SSRIs was the perfect tincture for regaining control over my thoughts and my life.
My anxiety isn’t gone. I still struggle with intrusive thoughts, but the difference is, I can notice that they don’t have to become my reality and I can stop them in their tracks. I have control, and that changes everything.
Listening to your body.
If you know you suffer from hypochondria and are working toward healing, you may begin to recognize the difference between your unique anxiety symptoms and actual symptoms of a medical problem. Physical symptoms of anxiety, such as pain or tightness in your chest, trouble breathing, and a racing heart can feel very scary at the moment, but mindfulness and somatic experiencing can be helpful steps for calming down and moving toward better bodily awareness.
Try the three mindfulness-based tips listed below recommended by Albers. They’ll allow you to check in with yourself, your sensations, and your real somatic experience, potentially allowing you to reestablish a more natural and unpanicked flow between the mind and body.
Deep breathing: The physical symptoms from our anxiety occur because we have been taking very short, shallow breaths. Taking deep breathing can be very helpful. The 4-7-8 method involves inhaling through your nose to a count of 4, holding your breath to a count of 7, and breathing out through your mouth to a count of 8. Continue doing this for five minutes or until your anxiety feels more in control.
Ground yourself: To pull yourself back into the present moment, take a few deep breaths using the method above and list five things around you that you see, hear, smell, touch, or taste.
Work with, not against, your anxiety: Acknowledge what is going on by saying, "I am feeling very scared right now, and I don’t like feeling like this, but I know I am not in actual danger."
Your job is not to end or stop the panic attack. That will happen no matter what you do. That might seem hard to believe, especially in the moment, but it’s true. "Review your panic attack history; have you ever had one that didn’t end at some point?" asks Albers.
She’s right: It will end, and you will be OK.
"The more aware you are of your distinct symptoms, triggers, and patterns, the better you will be able to contain your fear and panic when symptoms arise, which enables you to better determine the course of action you need to take," Albers says.
Below are three more concrete steps for mindfully taking charge of your health and, in turn, learning how to differentiate between physical ailments and anxiety symptoms:
1. Keep a health journal.
Record the date, time, your symptoms, what occurred just prior to your symptoms appearing, and the result (i.e., if symptoms went away on their own, the strategies you used, whether you sought medical attention, etc.). Bring this journal with you to your doctor’s appointments or to the emergency room.
2. Create a comprehensive health care team.
The best way to support your health and to begin working more preventively is to have a complete wellness care team you trust. This would include a general physician, any specialists you might need for specific health concerns and diagnoses, and could also include a dietitian, mental health counselor (particularly one who specializes in anxiety), and for women, a gynecologist. Having this team in place before you are in a medical crisis can help ease the added stress of not knowing where to turn in times of panic or concern.
3. Get regular checkups.
"You will want to complete an annual (or more often if needed) physical or check in with your health care team," says Albers. "This will allow you to have more control and peace of mind with your health and will enable you to become your own best health advocate." Knowledge is power.
And remember: It's OK to go to the doctor as often as you need.
"If there is ever a question as to whether you are experiencing an anxiety attack or a medical emergency, the recommendation is to seek medical attention," Albers tells me. "You are not being crazy for doing so; you are taking charge of your health."
At the end of the day, you’re your own best advocate. Trust your gut.
Georgina Berbari is a multidisciplinary artist focusing on photography and writing. Through these mediums, she creates works exploring the human body, sexuality, nature and psychology. Her work has been featured in the Hecksher Museum of Art on Long Island, ZEUM Magazine, Women’s Health, Bustle, SHAPE, BuzzFeed, and elsewhere. She is a Master's graduate of the creative writing program at Columbia University and a Yoga Alliance RYT-200 yoga and meditation instructor.