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Why So Many Women With ADHD Never Get The Help They Need

I know firsthand how important it is for those with ADHD to get support for their condition. Diagnoses are of course not always helpful for everyone, but my own diagnosis gave me the power to see that there was nothing inevitable about the way I felt.
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Fake Dictionary, Dictionary definition of the word ADHD. Attention deficit hyperactivity disorder
Fake Dictionary, Dictionary definition of the word ADHD. Attention deficit hyperactivity disorder

I am not the kind of person for whom neatness comes easily. I can't keep to a routine. Every surface of my house is piled with clothes, books, and papers (despite living with a minimalist partner). I start many things and rarely finish them. I find it impossible to focus on instructions. I imagine complex, faraway concepts, but can never seem to get the basics of reality right.

There's always so much going on in my head, like a thousand different songs playing at once. I try to follow them all, but I can't. I freeze in the overwhelm and feel like it's all my fault.

My disorganization was more obvious when I was young and at school. It was easy enough to work on things I cared about, but impossible to dedicate time to the things I didn't. When I was 14, I wrote a long essay about the plague. The subject -- the decimation of entire populations of Europe, all without explanation -- darkly fascinated me. I couldn't learn enough. But proofreading my own work didn't hold much satisfaction; it felt like eating the side salad after the main. Printing was also overwhelmingly cumbersome. My printer at home was broken, and the effort of saving the file onto a floppy disk to print it out at the library held zero appeal. So it did not get done.

When I handed in my essay two weeks after the due date, it was weighed down by late penalties, spelling errors, and shame.

As I've gotten older, it's been easier to hide or compensate for these issues. But all along, I've identified with negative descriptors for this part of my world and personality, like "absent-minded," "daydreamer," "disorganized," "aloof," "lazy," "strange," "confused," "clumsy," "distracted," and "somewhere else." In fact, I feel like I've lived my entire life somewhere else, and only on occasion do the colors and the responsibilities come flooding back, alongside a cold, heavy feeling in the pit of my stomach.

I constantly disappointed my parents, teachers, friends, and employers, and I had no answer for their chiding. The things I had to do -- pay bills, renew services, fill out forms, make appointments, turn up -- were so simple, all I had to do was go out and do them. But I just . . . couldn't.

Ultimately, I found it easier to try to cover up the holes in myself and my life than to mention my difficulties to anyone else and face potential ridicule.

Besides, I had other, more immediate problems with my mood that were severe enough to force me to speak out. I was eventually diagnosed with bipolar disorder. It was discovered very early on that I couldn't tolerate the most common antidepressant medications without experiencing extreme agitation and/or mania. Other things were tried instead, including stimulant medication usually reserved for those with an ADHD diagnosis.

And so it was that, at the age of 25, after having been in the mental health system for six years, I learned that I likely had a primarily inattentive form of ADHD. The stimulants I was offered to manage my mood were somewhat helpful for that end, but they were more helpful for my dampened stick-to-itiveness and organization. The evidence was clear enough -- the symptoms were there (albeit carefully hidden), and I responded to the treatment before I knew I had the issue.

The meds, rather than projecting me further into space, helped ground me back to earth. In this time, I began to finish long and complicated projects, I looked people in the eye when they talked, and I kept better track of what songs required my attention and what I could filter out. I have not become robotic; I have the same issues with literal and metaphorical mess that I've always had. I'm just better equipped to deal with it now.

I'm lucky to be where I am -- because for women with ADHD, finding help can be a particularly steep uphill battle.

How ADHD Impacts Women

ADHD comes with the stigma, rightly or wrongly, of overdiagnosis, of psychiatrists labeling the ordinary as in need of pharmaceutical intervention. A new study from Taiwan, for instance, concluded that being among the youngest kids in their class makes a child more likely to receive an ADHD diagnosis, when in reality, they're probably just "developmentally immature."

Alongside the suspicion of overdiagnosis is the chance that it may actually be underdiagnosed in girls. Girls with ADHD tend not to fit the mold of what ADHD "looks like." When most people think of ADHD, they think of young boys who bully out of boredom, can't sit still in class, and probably eat too much sugar. I held those same stereotypes myself, which is why I've barely spoken about my own diagnosis with those I know. I don't think they'd believe me.

And yet many of my symptoms--I did well at school and in tertiary studies, am usually more sedentary than hyperactive, and am deeply introverted--are actually typical for girls and women with ADHD. A study from last year out of the University of Texas at Austin found that girls with ADHD tend to have a different manifestation of the disorder than boys. While girls have issues with focus and attention, they are less likely to have as many issues with hyperactivity. It's possible that teachers don't recognize their struggles because they don't have as many behavioral problems in class.

Further, according to research from the National Center for Gender Issues and ADHD, girls are more likely than boys to be able to hide or compensate for their symptoms, even showing little in the way of impairment for years, particularly if their issues exist alongside high intelligence. This hiding can be a deliberate method to avoid people finding out about their struggle.

This is a desire I can very much relate to.

I never, for instance, convincingly learned my multiplication tables, despite taking calculus. I developed my own techniques for figuring out basic answers as fast as I could, drawing elaborate dot patterns on the margins of exam papers where calculators were forbidden. I didn't want to say anything about my struggles, because I feared it would cause a fuss and I would embarrass myself in asking for help. When you're a girl at school, standing out, especially in a negative way, can be viscerally painful, so you learn to cherish your ability to create secrets.

Girls and women also have a tendency to draw more negative conclusions about themselves based on their ADHD. A 2012 U.S. study found that women with ADHD had a greater chance of internalizing their problems--that is, of seeing their symptoms as an integral, and negative, part of themselves. They were three to four times as likely to attempt suicide and two to three times more likely to self-harm than young women in the study's control group.

This difference plays out more broadly, too; according to mental health research from the National Institutes of Health, men have a tendency to externalize their pain by expressing aggression, while women are more likely to develop feelings of self-hatred. Neither method of dealing with distress is ideal, but women are hit with two struggles: the difficulty of symptoms, and the difficulty of hating yourself for having the symptoms.

These forces make it particularly difficult for women to get diagnosed--and to find the help that could change their lives for the better.

A Way Forward

I know firsthand how important it is for those with ADHD to get support for their condition. Diagnoses are of course not always helpful for everyone, but my own diagnosis gave me the power to see that there was nothing inevitable about the way I felt. It also allowed me to improve my life; in addition to taking medication, I now reward myself for work I find difficult, write down what I need to remember to do, set alarms on my phone so I can do things on time, try not to overcommit to activities, and keep a non-intimidating to-do list.

I recognize now that those loaded words -- "lazy," "absent-minded," and so on -- describe my experiences, but not necessarily myself. They're just parts of existence I pass through more often than most. I've stopped internalizing them so much and instead, I try to find more productive ways of relating to my challenges, rather than writing them off as deeply damaged components of who I am.

But externalizing ADHD has only been one step in the process of learning to live with it. I've also come to embrace those experiences. I like big picture thinking, I like that I don't fully understand what drives perfectionism, I love that I follow tangents that sound bizarre to others, but often hold some sort of insight. I like that my inner world is big and loud, and that it is easy for me to explore it privately, even if I'm in the company of others. I like that part of the illness often involves an intense "hyperfocus" on things that interest me--from the plague to Mad Men. There are so many disadvantages to ADHD, but there are gifts that I would never give up, and that I'm glad are only moderated by treatment.

Being in the process of both externalization and acceptance is often contradictory, both of assuring myself that I'm normal enough, and of basking in aspects of myself that can be read as "symptoms." These are two tunes I follow at once. I clean my desk while I appreciate that it probably got so messy in the first place because my mind was busy focusing on things I hold dearer than tidiness. Regardless of whether or not they deal with mental illness, I feel like for a lot of women I know, achieving this kind of self-compassion is very difficult. It is something we have to go out of our way to commit to doing. I'm glad that ADHD has given me a reason to start trying.

The mass of contradictions is a part of life, a part that those with ADHD are alerted to every day. Coming to this space has taught me that human variation is as wonderful as it is difficult, and it makes me wish for us to stop getting so frustrated with ourselves and each other, as women and as human beings. If we could de-intensify those sources for anxiety that make us flustered and frozen, and happily allow experiences to have contradictory, messy meanings--bad/good, abnormal/brilliant, unengaged/focused--we could make more out of who we are and waste less time in hiding, and in self-hatred.

This piece by Erin Stewart originally appeared on The Establishment, a new multimedia site funded and run by women.

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