How I Lost 10 Years of My Life
“There is a kind of grief, a sense of simmering anger, that has taken up residence in the space that confusion and hopelessness used to occupy. I lost a decade of my life, not just to one arrogant man, but to all of the doctors that hand-waved my symptoms away, each convinced that they knew my body and brain better than I did. Their apathy and egotism almost killed me.”
“If it walks like a duck and quacks like a duck…” my psychiatrist responded when I suggested I might have ADHD. Although he trailed off, the words he left unsaid were obvious to me: “Then it’s just standard, run-of-the-mill depression and anxiety. Then I don’t need or want to look into this any further. Then you don’t know what you’re talking about. Then I know better.”
I still remember these words and their implications eight years later. I remember what he looked like: a squat old man sitting in his small, cozy office, facing me but not actually looking at me. It felt, at the time, that casually perusing his notes was more important to him than my declining mental health. And eight years later, I’m still angry.
The perception of attention deficit hyperactivity disorder (ADHD) as a “young boy’s disorder” permeates the cultural consciousness, as it has for decades, and the understanding of how ADHD presents in women has lagged as a result. There seem to be a few key factors influencing this ideology: how girls are socialized to internalize behaviors rather than externalize them, the pervasive false belief that ADHD presents identically in both genders, and a general bias against women in the medical industry, both as patients and as practitioners. Unfortunately, I fell victim to most of the above — because I did well in school and had no serious behavioral issues until my late teens, I couldn’t possibly have ADHD.
Women and girls with ADHD are chronically under- or misdiagnosed, to dangerous effect. Even if properly treated, they are more likely to experience domestic abuse, suicide attempts and self-harm (check), social isolation and rejection (check), emotional manipulation and gaslighting, and comorbid mood disorders (check, check, and check). I can just put a big fat check in almost all of those boxes, and I had no idea why these things were happening to me. It seemed nearly impossible to explain others’ actions or my own behavior because it wasn’t just a feeling of being “a little bit different” or “quirky and scatterbrained.” It was a raging, screaming agony that I felt at nearly all times — the kind that constantly pushed me toward suicide and self-harm — and that left a litany of failed relationships, trauma, and emotional carnage in its wake. It was a truly life-threatening failure due to medical negligence.
When my (thankfully) former psychiatrist said those words to me, I was 19 years old — too young to know that I could question and challenge my doctors but old enough to know that something was wrong. Nothing lined up — it couldn’t be depression, anxiety, and PMDD. All of the medications I had tried up to that point to remedy my overwhelming, nearly lethal mental illness weren’t working. In fact, many of the SSRIs, like Prozac and Zoloft, actually made it worse.
A keen nurse practitioner prescribed Wellbutrin for me around that same time, which provided mild relief, but it wasn’t quite enough to make a noticeable difference in my behavior or emotions. Crucially, however, we didn’t actually know why it was working. What was being treated? What was the underlying issue? My family, my doctors, my therapists, and even myself, all believed it was simply difficult, treatment-resistant depression — but, of course, it wasn’t.
I suffered and struggled through college. Though I was fairly academically accomplished, my social life languished and romantic encounters ranged from negative to downright traumatic. I was unable to pursue my passion for music and my mental health deteriorated rapidly. My impulsivity, my genuinely harmful expressions of pain, chased people away, and the abandonment hurt all the more due to what I now know is rejection sensitive dysphoria. Long story short, the Wellbutrin simply wasn’t cutting it.
Graduating college with more than a handful of suicide attempts under my belt left me drained and hopeless. My career suffered. I knew I was talented, I knew I was smart and passionate, but I just couldn’t show it. The drive to find a solution, to “fix” myself, became more frenzied by the day. After all, how could I succeed when I called in sick to work more often than I showed up? Or when I had to sneak off to the bathroom to cry when my editor critiqued my work? Or when my fear of rejection was so paralyzing that I stopped writing creatively altogether?
I burned through medication after medication, attended months-long intensive outpatient and partial-hospitalization programs, and cycled through ineffective therapists and psychiatrists until I finally found my current doctor. He was the first psychiatrist to actually listen to me. It was astounding. He sat with me for four hour-long sessions to get a complete, almost overly detailed medical history before he slammed me with a new diagnosis: Bipolar II. Suffice it to say, my world was rocked. Was this the answer I had been looking for? Well, it turned out only partially.
Mood stabilizers seemed to smooth out a little bit of the emotional turbulence, but it still wasn’t enough. The lithium made me hypomanic and I put on 60 pounds. The lamotrigine by itself was hardly effective. With every new medication I tried, I felt like I was cycling through the keys on a keyring. Each key I tried looked like the right one, but none of them turned the lock. I felt like I’d hit another wall, helpless against the overpowering force of my own seemingly broken brain.
Things turned uglier as the years passed. Suicidal thoughts were a constant companion, and I was afraid of ending up hospitalized or worse. I had to take what was to be my fourth short-term disability absence from work and, after a second opinion or three, had managed to convince my psychiatrist to sign off on electroconvulsive therapy. Although it’s an incredibly effective treatment for bipolar disorder (and not nearly as scary or unsafe as movies like One Flew Over the Cuckoo’s Nest would have you believe), it was hell on my body. The positive effects couldn’t last without continued treatment, so I resigned my efforts after my first three-month round of administrations.
The dead ends just kept coming. I was vacillating in and out of a suicidal state, depressed, then hopeful, and then hypomanic, but always misdiagnosed. Finally, eight years after that psychiatrist hand-waved away my thoughts on ADHD, I pushed for testing once again — and I really had to push, even with my current doctor. Being tested was a nerve-wracking experience, full of doubts and fears that I might just be chasing another fruitless treatment or wrong answer.
But then something amazing happened when I was 27: I was diagnosed with ADHD. Women are so often diagnosed with ADHD later in life, far later than they should be, and I was no exception. When I was finally, finally put on medication for my ADHD, I felt human for the first time in my adult life. I could be happy and I could be sad. I could actually use the coping skills I had been compiling to function and go to work. I could follow through on my social commitments and even developed new hobbies — but most of all, I could do all of these things and feel all of these feelings without fearing my world might collapse at any moment.
The relief I felt when I heard my diagnosis was astronomical, and it still is, even six months later. Hospitalizations, intensive therapy programs, and painful treatments like ECT no longer seem to be looming just over the horizon. The anticipatory dread of having yet another depressive episode or hypomanic suicide attempt has dissipated. In other words: I’m no longer waiting for the other shoe to drop. It’s hard to put that kind of liberation into words; if you were diagnosed later in life, you probably understand the feeling.
Unfortunately, it isn’t quite over. Today, I discovered another piece of the ADHD puzzle that shed some light on my past: people who menstruate and have ADHD experience the typical symptoms of PMS to a more extreme degree. My PMDD? Explained. The suicidality and destructive behavior that always reared its ugly hydra-like head just before my period? Makes sense now, in hindsight. I cried when I learned this. I cried because the tiny pieces of my mental health are starting to fall into place now.
But I also cried in indignation. There is a kind of grief, a sense of simmering anger, that has taken up residence in the space that confusion and hopelessness used to occupy. I lost a decade of my life, not just to one arrogant man, but to all of the doctors that hand-waved my symptoms away, each convinced that they knew my body and brain better than I did. Their apathy and egotism almost killed me.
Although it’s painful and strange to mourn for a life that never existed, I cannot push that feeling aside — nor should you, if you’ve been through this ordeal yourself. You have a right to your bitterness, your rage, and your resentment just as I do. It is more than understandable to grieve and ache for the time you lost or the things you might have done differently. And it’s completely valid for relief and hope to dovetail with that pain.
Late diagnosis is a complicated thing. That profound sense of longing for an imaginary life, one in which you were diagnosed and could accomplish all of the things you wanted to, can come and go like a wave. Cresting that wave can be overwhelming, so reach out to me if you need someone to talk to or want to share your story. I mean it. God knows another woman shouldn’t suffer another lost decade alone due to the misunderstanding of ADHD. It’s a nightmarish experience already — the least you deserve is some good company.
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Updated on December 9, 2020