What Brought Me Here

A little background on me, and my journey to ADHD diagnosis

Hello everyone! For those of you who don’t know me, my name is Kari Bentley-Quinn. My friends call me KBQ, so you can too if you’d like. I am 41 years old and I live here in beautiful New York City, and have since 1999. I am a playwright, essayist, and working on some screenwriting projects. 

I am also newly diagnosed with ADHD, which is why I have started this Substack. I feel compelled to talk about this subject, because there are so many women (including non-binary and trans folx assigned female at birth) who have gone their entire lives with this disorder, and who are not getting diagnosed. I’ll be talking a lot about the gender gap in diagnosis and treatment here, but for now, here is some background. I’m going to start with talking a bit about how I got here.

To have ADHD - especially undiagnosed and/or untreated ADHD - is to suffer. 

Many people talk about ADHD like it’s a cutesy little thing where you forget where your keys are or can’t focus on an assignment or read a book.. If I had a dime for everyone who was like “I think COVID gave me ADHD”,  I’d be rich. I also understand why they said it. When we hear of someone else’s suffering, we want to empathize. We want to make people feel less bad about their own suffering by offering up some of our own. I’ve been guilty of it at times. There is a desire to make people want to feel less alone in their suffering. Unfortunately, for the sufferer, it can have the opposite result. It can make them feel as if they have not been taken seriously. It is difficult to explain what having this disorder feels like, and even harder to explain how it differs from run of the mill forgetfulness or an inability to follow through with tasks. Everyone does feel like that sometimes, and certainly the isolation and trauma of COVID caused focus and attention issues nationwide. There is no question that all of us have suffered from the cognitive effects of the pandemic. 

However, there is no such thing as adult onset ADHD. ADHD develops in early childhood. The disorder can mimic a lot of other mental health issues, which is why girls and women especially continue to be underdiagnosed. I repeat - THERE IS NO SUCH THING AS ADULT ONSET ADHD. You can have a worsening of symptoms as you age, and the reason you are seeing an uptick in diagnoses is in part because the pandemic brought a lot of people’s symptoms to the forefront because all of our masking and coping was taken away. But anyone who has this developed it in childhood, usually before the age of twelve.

In an effort to differentiate between normal focus issues and ADHD, this is my noble attempt to explain what it’s like inside my head on an average day. I am speaking only from adult experience - I am actually still unpacking how this manifested in me as a child and teen (more on that later…).

Imagine that you are sitting on the couch on a random Tuesday night. Imagine your brain has decided to - at warp speed - present you with every possible worst case scenario. This makes you incredibly susceptible to rejection and abandonment feelings, which also means you have a problem regulating your emotions. It also creates issues with executive function and decision making. You are on a loop of worst case scenarios, self loathing, forgetting what you were thinking about entirely, twenty completely random thoughts, and also Mambo No. 5 by Lou Bega. Then you remember that you went to the kitchen for something. What was it? Oh, right. Water. You get your cup and fill your water and then you notice that the cap to the bottle of the olive oil is missing. Where did that cap go? Oh wait I think I see it. Oh, no wait, that’s the cap to the other thing. What does that cap go on? Let me look for it. Oh the counter is dirty. I should clean it. Where is the rag? Let me look in the cabinet. OOOOOH WE HAVE ROSEMARY CRACKERS. Let me get some of those.

You take your crackers back to the couch. You realize you forgot your water. You go back into the kitchen to get said water. You get side tracked by your cats, who you kneel down and pet, and return to the couch, realizing that for the third time you have forgotten your water. There’s now a combo of Mambo No. 5 AND Anti-Hero by Taylor Swift running through your head. Maybe you pour a glass of wine. You drink the wine too quickly, but it does its job. The noise quiets for a moment. Now it’s just this nagging idea you forgot something. Oh right. Water. You successfully grab the water this time. You abscond to the couch to eat your crackers and drink your water/wine. You put on the show you wanted to watch and only kind of watch it while you also play Candy Crush on your phone and doom scroll on Twitter. Your spouse/roommate says something to you. You pretend you hear them, because they get really irritated with you when you don’t listen, but then you realize as they are waiting for you to say something that you haven’t entirely heard what they just said. You weigh your options: you either make something up based on what you did hear and hope that works, or you somehow beat back the vomit inducing shame to ask them to repeat it. Either option makes you feel like a complete piece of shit. You try to finish watching the show. You absorb maybe half of it, all the while beating yourself up for being a terrible listener. Then you get bitch slapped with anxious thoughts about the million different ways you may have screwed up at work today. Then you remember something stupid you said at a party ten years ago, just for fun. 

Now for the worst time of all - bedtime. This is when the phone gets put down and the distractions start to fall away. You go through your nighttime checklist and try to remember all the things: brushing teeth, washing face, taking meds, whatever you have to do. You attempt to not get distracted, but more often than not a face goes unwashed or teeth go unbrushed. You are exhausted. You are complete toast. Maybe you have some time to kill, so you go hyperfocus on a video game or whatever the hobby of the week is. Anything to keep the anxiety at bay. Anything to keep the noise down. That brain wants the dopamine, and maybe the brain will quiet down enough to go to sleep. Or, more than likely, the dopamine wears off and you are left with crippling anxiety, shame, and insomnia. Fun for the whole family! 

Sleep is an ADHD’ers best friend and worst nightmare. It’s either friend or foe and nothing in between. You just never know. It keeps you guessing. But in this scenario, you go to sleep. Not sure what it took to get there. I’ve tried it all. I’m sure everyone with ADHD has their own elixirs and potions and pills and rituals. But you sleep. You wake up tired. You’re never rested. There is no such thing as enough sleep. The second your feet hit the ground, it’s another song lodged in your head and the endless list of shit you have to do. Somehow, you get your shit together. Maybe you forgot your lunch, but you make it out the door. You do this every day. You somehow manage. 

But then there are the days you cannot manage. The days you just freeze and can’t start a single task. The day the idea of getting in the shower makes you want to nope yourself out of existence. The day you indulge in any vice available to you because you can’t stand the noise and the anxiety one more second. The day your brain feels like the inside of a pinball machine that’s gone tilt, all the banging and lights and flashing. Maybe you finally just melt down and have a full blown anxiety attack. Maybe you get too drunk or high and then have an anxiety attack. Maybe you talk for hours on end, the words spewing out of you like lava, just so you don’t have to deal with the quiet that your brain hates the most - the time you are as mean to yourself as humanly possible, the time your brain shows you a slideshow of every terrible and embarrassing thing you’ve ever done in your entire life. You think about every person who has ever rejected you, more often than is healthy. You’ve done the therapy. The SSRIs. The benzos. The yoga. The cardio. The meditation. The diets. The self help books. They all help temporarily, but then you’re right back where you started. You’ve tried them all. Nothing sticks. Nothing fixes it. 

And then, there are the good days. The days you’ve had just the right amount of exercise or caffeine or wine. The days you got the balance perfect. When your mask stayed on. When you were something resembling a functional human. Your brain adjusts. You learn how to hide it, all the while thinking that you are just a giant piece of shit who can’t do anything right. Your self esteem is non-existent. You have more unfinished projects than you do finished ones. Paintings half completed, books half written, furniture half built, a sweater partially knitted attracting moths in the closet. Unfinished. Unrealized potential. When you do manage to hyperfocus enough to finish something, it can leave you feeling depleted rather than accomplished, and it is hard to recognize if it's good or not, because if anyone knew how hard it was to finish they would never take you seriously. The impostor syndrome is crippling. It takes a long time to acknowledge a job well done. No matter how successful anyone thought I was, deep down I knew I was capable of so much more. I never felt like I was reaching my full potential. I felt like I had to work twice as hard to accomplish half as much.

I overcompensated for all of this by working my ass off. I went to grad school and worked full time. I ran a theater company. I wrote a bunch of plays. I traveled and put up productions and got an agent.  I watched my peers go on to amazing successes and careers while I lagged behind, but kept cranking work out and overscheduling myself until I was exhausted and resentful. The burnout started in my mid 30s, and I found that being overworked was beginning to take its toll. Then the pandemic hit, and all of my coping mechanisms were stripped away. The mask began to slip. I was under stimulated and overwhelmed at the same time. We had a death in the family. My career went into a stall. I couldn’t write. I could barely think.

My symptoms continued to worsen. My binge eating disorder - a dragon I thought I had slayed - came back with a vengeance. I gained forty pounds. I also drank. A lot. I have always been a drinker, but never to this degree. It was beginning to take a toll on my health and my marriage. I had a couple of scary blackouts, and those were previously rare occurrences. Sometimes if I drank too much I would lash out at my husband. I come from a family of alcoholics, and I just assumed I had finally fallen prey to the same affliction. I felt such intense shame that I thought it would swallow me whole. I was drowning.  I didn’t even know who I was anymore, and no matter how hard I tried to pull the nose up, I crashed and burned over and over again. On the day after Christmas of 2022, I stopped drinking and stayed sober for two months. It wasn’t difficult. I was not physically addicted to alcohol, but my focus and attention issues worsened, and that’s when my suspicion that I had ADHD led me to push for diagnosis.

Up until the past two years, I knew next to nothing about ADHD. It was only when my younger brother was diagnosed that I started reading about it, and came across an article about how ADHD presents differently in girls and women. The article also mentioned that it runs in families. The light of recognition went off.  I started asking friends if anyone knew a psychiatrist who specializes in ADHD, and I got a recommendation from a friend. I made an appointment, and shared my concerns. After several months of getting to know me and my history, she agreed to do the formal evaluation this past April. I was asked a list of questions, and had to come up with examples from before the age of 12 and from my adult life. It took about an hour, and I was officially diagnosed with ADHD Inattentive Type (I only answered a few questions affirmatively in the hyperactivity section). The doctor told me that most people with my type of ADHD respond well to Adderall. I was nervous about taking it. I have had anxiety for my entire life, and I hoped that the stimulants would not make it worse. At that point, though, I was willing to try anything.

To my surprise, it did the complete opposite. After my first dose, I sat dumb struck on my couch, astonished. There weren’t three songs in my head at once. I knew where my water was. And I wasn’t thinking about much of anything. That quiet was one of the most overwhelming sensations I’ve ever experienced. Imagine you were born with a buzzing in your ear. Sometimes it's extremely loud to the point where it makes you panic. Sometimes it's quiet, almost imperceptible. But it is always, always there. And then one day someone switches it off. The buzzing ceases. Silence. Over the next two weeks, my depression finally relented. My anxiety - a constant companion since the age of 12 - was all but gone.  Other than dehydration and a suppressed appetite, I had minimal side effects. I was able to write again. I started to enjoy myself again. What’s more is that my binging behaviors disappeared overnight. I now have to remind myself to eat, and I can have a glass or two of wine and just stop. Most days I can go without drinking at all and I don’t even think about it. 

Four months later, I feel like a brand new person. It is hard to quantify suffering until you are not suffering anymore. I have known something was wrong with me for most of my life, but I never had a name for it. I just thought I was broken, flawed, lazy, and selfish. It is in this time that I have learned that the absence of suffering isn’t happiness, it is relief. I can’t say there isn’t some grief for the life I could have had with the right help, but I also feel empowered because I can finally do something about it. I suppose after a lifetime of suffering, feeling gratitude is the most positive thing I can do. I am grateful to have health insurance and a second chance. I am lucky enough to be heading into the second half of my life armed with knowledge, medication, and a greater understanding of myself. I am not cured - there is no cure for ADHD - but my symptoms are well managed. For the first time in a very long time, I feel hopeful. I feel like I am in the driver’s seat of my life. I can finally let go of the shame and self-loathing that threatened to unravel everything I’d ever worked for. Maybe - just maybe - I can finally give myself the compassion and understanding that I’ve given to others so easily.

If you are reading this, and you see yourself in any of this, I hope you’ll join me. 

You are not broken. 

You are not lazy.

You are not selfish.

You are not a failure. 

And most of all, you are not alone.