I'm much more than just a diagnosis, writes Sarah Fay

I’m much more than just a diagnosis, writes Sarah Fay


My first diagnosis came at the age of 12. I didn’t eat much for months, then nothing for four days, then I couldn’t hold on to food or water. In the car on the way to the hospital, my mother gripped the steering wheel and shouted, “What do you think you’re doing?” Her voice was tense with panic. I didn’t have an answer for her, not even in the cold examination room, when I got on the scales and the doctor swayed the weights lower and lower until she settled. The cheerful expression that greeted us faded.

“Anorexia nervosa,” he said authoritatively.

As a girl – not a teenager yet – I didn’t think to ask him, a man in a lab coat with a stethoscope hanging around his neck. Until then, I had never heard that word anorexia. (It was the 1980s – long before thinspo and pro-ana instagram accounts idealized and supported the disorder.) The therapist later told me classic symptoms, none of which I showed: I never weighed, counted calories, or thought fat. .

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It’s not that something is wrong; It was. What I did was extreme, even dangerous. But it made sense to me. My parents were divorcing and I was about to start a new school. I was extremely sad and scared. The sadness and terror made my stomach ache, and I didn’t want to eat because of the stomach ache – which seemed to surround me. Maybe it was an attempt at control, a frequently cited reason for anorexia, but if so, I wasn’t aware of it.

For the next 30 years, I struggled with many of the emotions, thoughts, and behaviors that characterize human experience: depression, anxiety, restlessness, mental discomfort, obsession, insomnia, exaggerated indulgence, fear, distraction, despair, and more. I have also experienced some that are not so common: social isolation, self-hatred, depersonalization, derealization, hyperactivity and suicide.

My fights were tough. Most often, my diagnoses came from primary care physicians during annual visits. (I didn’t see a psychiatrist until I was 40.) At various times, I was told that I had generalized anxiety disorder (GAD), major depressive disorder (MDD), obsessive-compulsive disorder (OCD), attention deficit hyperactivity disorder (ADHD). ) and bipolar disorder – sometimes in combination, sometimes individually.

Diagnosis can bring relief and even feel like a lifeline. But it wasn’t so clear to me. Once I was diagnosed, she became the center of attention. It was the reason for my anxious thoughts, overwhelming emotions and unwanted behavior. All other aspects of my life were secondary.

If a mental disorder was me and the reason for my thoughts, feelings and behaviors must be the key to my mental health. But no one did.

In some ways, each diagnosis was a self-fulfilling prophecy. I identified with it so strongly that I embodied it. (It didn’t help that I was told was anorexic and bipolar, not that I am he had I was diagnosed with depression as a depressed person. The diagnosis of anxiety caused me even more anxiety. With the diagnosis of ADHD came the belief that I am simply someone who is easily distracted and has trouble paying attention. The diagnosis of OCD made me pay more attention to my obsessions, which intensified my compulsive behavior. As a person with bipolar disorder, I believed that my energy surges and periods of inertia were manic highs and depressive lows.

I’m thinking of myself as the diagnosis encouraged me to consider myself incompetent and I set the boundaries of what I could achieve. Although I earned an MFA and a PhD, I eventually taught writing at various universities, published in reputable magazines and newspapers, and eventually wrote a book on the subject, often failing to function. (Academia is one of the most supportive work environments.) At age 40, I could no longer live alone. I was one of the lucky ones that my mother let me live with her.

I was sitting in my new psychiatrist’s office. It was January. Chicago was experiencing a polar vortex. Although in the office of Dr. R was warm, yet I felt cold to the bone. Only a laptop sat on the glass table. There were only a few dozen books and a few decorative statues on the shelf. Elegant. Effective.

Dr. R was wearing black pants and a white collar shirt. He was energetic, on the verge of buoyancy. He pointed vividly in my direction. “Water?”

I felt like I was cracking and falling into a deep hole, and the water seemed like a tremendous effort. I wanted help – a quick solution. “No thank you.”

Twenty-seven minutes — the length of the meeting — there wasn’t enough time to describe exactly how my mind seemed to fall apart, so I mainly gave him my mental health history, a list of my diagnoses.

When our session ended, I waited for him to declare my new diagnosis or confirm my current one (bipolar disorder) as if he were from above. He did not; he just sat there as if he were deep in thought. Finally, I asked him what he thought I had. He looked at the ceiling and then back at me and shrugged. “I don’t know what you have.”

I don’t know? No doctor has ever told me these words. They made their evaluations quickly and confidently. Most arrived during the 15-minute annual visit.

Dr. R and I decided on the time of my next meeting and I went out into the bitter winter.

I don’t know? How could he not know?

Icy snow lined the sidewalk. Cars and taxis were honking. The world seemed rougher, but also brighter. Crisp.

As I walked around the corner and waited for the pedestrian sign to cross Michigan Avenue, my mind began to spin – in a healthy, inquisitive way: Where did mental health diagnoses come from? what it was? Who discovered them?

I went home to my tiny apartment overlooking a brick wall, determined to learn all about mental health diagnoses.

And I did research. In the blue light of my computer screen, I immersed myself in Google Scholar and read meta-analyzes of scientific studies. I swallowed book after book by psychiatrists, researchers, sociologists and medical historians.

What I discovered shocked me. The mental health diagnoses we receive were not born of scientific discoveries; these are the theories written in the book: Diagnostic and statistical manual of mental disorders (DSM), often referred to as the “psychiatric bible”. The DSM is based on the views of its authors, who were historically white, typically members of the American Psychiatric Association (APA), not science. I spent 30 years in the mental health system and have never heard of DSM. I wonder if any 46 percent of American adults and 20 percent of American children and teens who have received at least one diagnosis of DSM in their lifetime have one.

What I discovered below was practically destabilizing. Unlike most medical diagnoses, mental health diagnoses are not 100% valid. Validity, the most basic principle in medicine, would mean that DSM diagnoses could be accurately measured and determined; I can not. No biological markers distinguish between what is “normal” and what is “pathological”. No objective measurement – no blood test, x-ray or biopsy – can show that a person has a diagnosis. (Dementia and rare chromosomal disorders are an exception to the above.) Diagnoses are based solely on the patient’s own symptoms and the physician’s opinion.

DSM diagnoses are also unreliable. Reliability means that multiple physicians who are presented with the same patient can rely on the symptoms listed in the DSM and agree on the patient’s diagnosis. This is not the case with mental health diagnoses. Based on the clinical picture, doctors only give us their best estimate.

It took me a while to realize that none of this meant that mental illness was not real, just that we should not take the diagnoses we receive as the truth of the gospel – especially in milder cases where it is difficult to measure the level of dysfunction. DSM cannot define dysfunction, so anyone can get a diagnosis.

As a woman, I had other reasons to be skeptical. Women are the biggest consumers of mental health care. (The fifth edition of the DSM defines gender differences as “variations attributable to an individual’s reproductive organs and chromosomal complement XX or XY” and gender differences as “variations resulting from biological sex as well as individual self-presentation, which includes psychological, behavioral and social consequences of the perceived gender.) We are more likely to be prescribed antidepressants, treated with electroconvulsive therapy and hospitalized. We are more than twice as likely to receive mental health services, ie a diagnosis of DSM, than men. These statistics suggest that women have more mental disorders, but only show that women receive more diagnoses of DSM. We are diagnosed with depression, anxiety and post-traumatic stress disorder – diagnoses that are often stigmatized as signs of someone who is “neurotic”.

I stared at the brick wall behind my window. As someone who studied women’s college and who identifies herself as a feminist, I should have been up for it. Feminist groups have been protesting against gender bias in the DSM since the 1980s. For example, the proposed diagnosis of masochistic personality disorder (renamed self-defeating personality disorder) appears to justify violence against women by some women enjoying abuse. Borderline Personality Disorder (BPD) and other stigmatizing disorders often stereotype women as “crazy,” “difficult,” “hysterical,” and “crazy.”

All my doctors were men except one. Was their gender a reason why I didn’t ask them or push for more information? Or was it that, as Americans, we tend not to ask doctors because “they know best”?

As for the latter, I simply had no idea about the limitations of mental health diagnoses. Now that I’ve done that, my life has changed. My mental health was something I was finally dealing with – not just as someone who spent most of my life in the mental health system, but as a woman.

I still visit Dr. R and I take medication as directed. It took a year, but in the end I revealed everything I learned about DSM. My hesitation with him about it came in part from gender conditionality and because I feared he would no longer want to be my psychiatrist. He was the only doctor who was honest with me.

Pathological: The true story of six misdiagnoses

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When I explained to him that I was writing memories that were partly a DSM investigation, he threw up his hands.

“DSM,” he said in horror. “It’s a mess.”

We’ve been talking about DSM for a long time since then. He has been transparent about her shortcomings and controversies, but believes that psychiatry is the best of her profession.

At my last meeting, he asked how I was doing. I have characterized parts of my life as great and he said I was feeling strong-words I didn’t think I’d ever use to describe myself.

When mental health diagnoses first became standardized in the mid-19th and first half of the 20th century, they were intended only for physicians. They served as a shortcut for clinical communication with each other O patients. Patients rarely knew what they were diagnosed with. Diagnoses were never meant to be used as a lens to understand ourselves, others and the world. There is much more to it for us – as women – than that.

The author is Sarah Fay Pathological: The true story of six misdiagnoses. He writes for many publications, including The New York Times, The Atlantic, Time, and Paris Review, where she was an advisory editor. She holds the Hopwood Prize for Literature and grants and scholarships from Yaddo, the Mellon Foundation and MacDowell Colony, among others. Fay is a faculty member at Northwestern University and is the founder Pathological: Movement.

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