Reminder: You Are Not Your Diagnosis

Having a name for your condition can help with proper treatment, but it’s not who you are.

by Eddie McNamara Health Writer

You will always remember the day you were first diagnosed with a mental illness. It’s like the day you lost your virginity or watched your children be born (or so I’ve heard—I’m not a dad). For some it’s an end-of-my-life-as-I-knew-it moment that you’ll use as a life marker where there’s no going back, like a graduation, promotion, or wedding. For others, it’s a validation of your thoughts and feelings when that thing you’ve been suffering with finally has a name and potential treatments. Either way, when a mental health professional first diagnoses you, you’re going to feel a lot of ways: fearful, relieved, hopeful/hopeless, puzzled, embarrassed, guilty, furious, or a mix of all those at once. Your diagnosis—the very words that name what you’re experiencing—means something.

An accurate diagnosis means there’s an actual explanation for what’s going on and a real reason why you’re having the symptoms that you’ve been dealing with. It means doctors can figure out the most effective treatment plan for you—and it means they can look up the appropriate codes to bill your insurance company. You know what it doesn’t mean? That something has changed in you that makes you broken or less than. I can’t stress this enough: Undiagnosed you and diagnosed you are still the same person.

What's in a Name?

When I was first diagnosed with PTSD, panic disorder, major depressive disorder, and agoraphobia in 2005, I walked out of my doctor’s office fixated on the idea that my life as I knew it was over. My diagnosis was a list of undesirable illnesses that sounded like a life sentence in the prison of my darkened bedroom. The doc confirmed it was worse than I thought. I mean, I knew I was getting blindsided by crippling panic attacks from out of nowhere and acting kind of goth, but was I really THIS damaged?

When the doc told me I had “major depression,” I thought he meant I had the most severe and debilitating depression possible. I didn’t realize back then that while it sounds dramatic, major depressive disorder is just a fancy way of saying I was depressed. (There is no minor depressive disorder, by the way, or kinda depressive disorder. MDD is the catch-all for run-of-the-mill depression.)

Was I depressed? Yeah, but who in my situation wouldn’t be after losing dozens of friends and co-workers in the 9/11 disaster? Not to mention working on-site as a first responder, having daily panic attacks, being caught in a high-stress, demanding job with endless overtime, and never seeing my wife, friends, and family because I worked the night shift and slept while the rest of the world was alive? Look, that shit’s mad depressing. I’m getting depressed thinking about it now.

Finding a Fresh POV

My mistake, post-diagnosis, was allowing myself to become the labels I was given. Instead of pushing myself to do things, I fell back on “but I have panic disorder” and stopped driving, visiting crowded places, and taking public transportation. When we had a wedding invitation or a party to go to, I told my wife, “but I have agoraphobia”. In fact, I avoided almost all social events with “but I can’t, I’m Mr. Major Depression.” I used my diagnosis as an excuse.

What is a diagnosis anyway? In the case of mental health disorders, it’s somebody’s (educated) opinion about what might be up with you. Doctors can’t draw blood and tell that you have generalized anxiety disorder like they can with anemia. The best a clinician can do is talk to you about your symptoms and circumstances and match those up with a psychological disorder outlined in the DSM-5. That’s the latest version of the Diagnostic and Statistical Manual of Mental Disorders, which means there have been four earlier versions that had to be updated and changed and will likely have to be changed again in the future since the science and knowledge base is always growing and changing. It’s not exactly the Ten Commandments set in stone and given to Moses on the mountain.

Look, a diagnosis is essential for properly treating any mental health issue; I’m just saying, don’t get too caught up in the name of the condition and what it might say about you or sound like to other people. It’s going to change anyway.

Words Matter

Over the past several years, there has been a concerted effort to change the language surrounding physical health conditions to separate the person from the disease. You’re no longer a “cancer patient,” you’re a “person with cancer.” You’re no longer “obese” but a “person of size.” Clinicians are recognizing that terms such as “obese” and “fat” often carry negative, demeaning social connotations. The social sciences have been quick to adopt “person experiencing homelessness” instead of “homeless person.” (In our grandparents’ day, they were called a “vagrant” or “bum”—talk about harsh.)

In each of these instances, an effort has been made to recognize that the totality of a person is more than their disease or present circumstances, and it’s kind of mean and unhelpful to label people without considering that. So, let’s try to extend this spirit of goodwill to mental health conditions. And not just for other people—for ourselves, too. I experience anxiety, panic attacks, and I have feelings of depression, but they don’t define me. The words PTSD, panic disorder, depression, and agoraphobia don’t describe me every single moment of every single day. Sometimes I’m a writer. Sometimes I’m a vegetarian chef. Sometimes I’m the world’s best uncle. Sometimes I’m the PlayStation champ of FIFA 2021. My diagnoses are a part of me, but just one part.

Terms for Obesity: Obesity. (2012). “Patients’ Preferred Terms for Describing their Excess Weight: Discussing Obesity in Clinical Practice.” ncbi.nlm.nih.gov/pmc/articles/PMC3310899/

Eddie McNamara
Meet Our Writer
Eddie McNamara

Eddie McNamara is a 9/11 first-responder and former cop turned vegetarian chef and author. He's been living with panic disorder and PTSD for 17 years, and he'll be sharing his experiences, thoughts, and seriously hard-won advice every month. Check out all his columns for "Panic in the Streets."