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The Lost and Forgotten: Women with ADHD by Kaitlyn Cihak

This story is part of a partnership with the TCU Women’s Health Initiative. The purpose of the Women’s Health Initiative is to educate students at TCU and the general public about women’s health issues as well as advocate for women’s health issues on campus and in local communities. In addition, they support women who are struggling/have struggled with women’s health conditions, including but not limited to endometriosis, PCOS, fibromyalgia, and other autoimmune conditions. For more information on this organization, contact President Mackenzie Kahrhoff at [email protected].

Imagine trying to thrive in a world that is not designed for you. In a world where being successful is dependent on working against your own brain. That is what it feels like to have attention-deficit hyperactivity disorder. Now, imagine being told your entire life that you are lazy, crazy, dramatic, or spacey. From personal experience, I can tell you that, quite frankly, it sucks. It sucks that I was diagnosed and treated for anxiety, depression, and bipolar disorder, none of which I had. It sucks that I had to almost flunk out of school, develop an eating disorder, self-harm, and become suicidal for someone to listen to me. And most of all, it sucks that my story is not unique.

Women and girls with ADHD are overlooked, forgotten, and left untreated. They, like myself, suffer in silence, lost in their own brains, scared and helpless. Some estimates suggest that up to 75% of women with ADHD are never diagnosed (NeuroHealth). All those women are left to try and survive in a world that is working against them, trying to pick up the broken pieces of themselves and create a life worth living. Due to the high rates of undiagnosed and untreated ADHD in women, and the lifelong struggles they face, the general population should pay more attention to how ADHD affects women.

According to the National Institute of Mental Health, attention deficit hyperactivity disorder, ADHD, is a neurodevelopmental disorder characterized by an ongoing pattern of inattention and/or hyperactivity-impulsivity that interferes with functioning or development. A common misconception about ADHD, in general, is that it affects more men than women. It was initially thought that ADHD was simply more prevalent in males; however, this has since been debunked. A study conducted by Patricia O. Quinn, MD, and Manisha Madhoo, MD, looked at all the existing research on female ADHD. This study highlighted a few particularly critical issues pertaining to female ADHD. The researchers concluded that greater awareness regarding the symptom profile of ADHD in women is necessary for proper diagnosis and treatment.

My personal, anecdotal experiences have been very consistent with what these doctors found. My mom attempted to get me a referral for ADHD testing when I was in kindergarten, and then again in fourth grade. I already was showing an inability to sustain attention, emotional dysregulation, and hyperactivity. These symptoms only became more intrusive to my education over time. Unfortunately for me, my symptoms were brushed off by both my doctor and my schoolteachers. Both times I was denied a referral as my teachers claimed that I was “too smart” and “too well behaved” to have ADHD. My mom tried to advocate for me explaining to my teachers and doctor that she would have to make me stretch, do handstands, or pace around the living room while she quizzed me on my spelling words to keep my attention. It was not until I was failing out of college at 20 years old that I was finally given a referral. I was diagnosed with severe combined presentation ADHD and have since started treatment. This not only improved my grades but improved my daily life and happiness astronomically. I spent fifteen years of my life searching for answers and feeling like something was wrong with me. The simple answer is that it should never have taken fifteen years for me to get diagnosed and treated.

One of the reasons that female ADHD is grossly undertreated and goes undiagnosed so often is due to a lack of information on the issue. ADHD was first identified in 1902 by British pediatrician Sir George Still. Unfortunately, the first study that looked at how ADHD presented in females, was not conducted until 1997, 95 years after ADHD was first identified. This study, published in 2002, found that girls with ADHD have many of the same problems as boys with the disorder, and some extra ones. It is not surprising that female ADHD goes undetected when we have less than 20 years of research on it, compared to the 120 years we have on males. The implications of this lack of research are vast. Not only does it mean that societal views on the topic are inaccurate or incomplete, but also that the general population is not well informed on what to look for. Michelle Frank, a clinical psychologist, and ADHD expert stated in an interview, “I think we have a lost generation of women who are diagnosed with ADHD later in life, who have had to manage the condition on their own and deal with it on their own for the majority of their lives. The diagnosis is a blessing and a curse: it’s a great relief, but they wonder what could have been different if they had only known.”

This idea of a “lost generation” is a perfect representation of the 100-year delay in research on female ADHD. It created a generation of women who were lost and forgotten by society. A generation of women who will never know what they could have accomplished in all that time waiting for a diagnosis. I am a part of that lost generation, waking up every day incredibly grateful that I finally have the help I need, but mourning over the loss of fifteen years of my life spent waiting.

Perhaps the most upsetting information that I stumbled upon during my quest to understand female ADHD was a research study conducted in Canada. This study investigated the correlation between ADHD and suicide attempts using a nationally representative study of 21,744 participants. The researchers discovered that one in four women with ADHD have attempted suicide. This was significantly higher than the 8.5% of men with ADHD and 3.3% of women without ADHD. Women with ADHD, who are lucky enough to be diagnosed and treated, are years behind their male counterparts in terms of treatment. Often, they have lived with their symptoms for years or even decades. This is an extraordinary amount of time to allow the symptoms to fester and the consequences of those symptoms to show. This study showed the heartbreaking reality of what these women go through.

Unfortunately, life for the remaining 3 out of 4 women with ADHD is not all sunshine and rainbows. Being one of those women, I have firsthand experience on how the lack of awareness of female ADHD can be detrimental to an individual’s life. My brain feels like it has one hundred tabs open all the time. Every sound, smell, taste, and touch are amplified. When I was younger, I would cry myself to sleep wishing, hoping, praying that my mind would just be quiet for a few seconds. It is completely and utterly exhausting. The first time that I ever took medication for my ADHD, I called my mom crying tears of joy. It was the first time in my entire life that my brain had felt calm and quiet. That is only the beginning of what it feels like to have ADHD. Shannon L. Alder, another female with ADHD, summarized what it feels like to have ADHD. Her description puts into words feelings that I have never been able to communicate. She wrote:

“It is growing up different. It is extreme hypersensitivity. It is a bottomless pit of feeling you’re failing. It is not learning from your mistakes. It is distrusting people because you have been hurt enough. It is fighting to be right; so for once in your life someone will respect and hear you for a change. It is a hyper-focus, so intense about what bothers you, that you can’t pay attention to anything else, for very long. It is a never-ending routine of forgetting things. It is a boredom and lack of contentment that keeps you running into the arms of anyone that has enough patience to stick around. It wears you out. It wears everyone out. It is risk-taking, thrill-seeking, and moodiness that never ends. It is the latching onto the acceptance of others—like a scared child abandoned on a sidewalk. It is the deepest anger when someone you love hurts you, and the greatest love when they don’t. It is beauty when it has purpose. It is agony when it doesn’t. It is called Attention Deficit Disorder.”

Having ADHD is not a walk in the park. Imagine feeling all of that, and then not getting a diagnosis until adulthood if you are lucky. Getting a diagnosis one year earlier would have prevented so much suffering in my case. I cannot even begin to imagine how much different my life would have been if I received my diagnosis 15 years earlier.

My greatest wish is that no little girl ever must go through what I did. I dream of the day where girls with ADHD get the help that they so desperately need in childhood. I dream of the day where girls with ADHD are diagnosed and treated on the same timeline as their male counterparts. I dream of the day where the world had a bit more compassion and understanding for women with ADHD. I dream of the day where no woman with ADHD wants to die. So, to all the parents, teachers, siblings, friends, aunts, uncles, cousins, coaches (the list goes on), learn about female ADHD. Learn what to look for and how to get help. Do not deny referrals to doctors because of your misinformation. Do not let another generation of women become lost and forgotten.

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