31 August 2023
I was inspired to write more about this based on a Mastodon post I published this week. Essentially, I’ve become burned out with the “ADHD LOL” meme culture and general lack of consideration for all the excessively negative aspects of either having ADHD yourself, living with someone with ADHD, or what is becoming more common: both. ADHD can undoubtedly be funny, but when most of our societal exposure consists mainly of these light-hearted glimpses into the disorder, a genuine lack of understanding and empathy takes hold.
We need to talk about the hard times and suffering. Not necessarily to feel bad for people with ADHD but to appreciate how many obstacles they regularly overcome–requiring tremendous strength and flexibility.
There is still, unfortunately, a lot of stigma that exists around ADHD–perhaps in part because of this lightheaded ADHD culture. Therefore, it’s no surprise that many ADHDers would not want to open up about the details of these struggles. Most of these misconceptions take the form of assuming people with ADHD would be bad employees because, LOL, they can’t get anything done and lose their keys, right?! While this is untrue and overly simplistic, I thought it would be best to write a post that draws from both personal experience and the negative, everyday aspects of documented ADHD in general–so, not just what my household struggles with specifically.
ADHD deserves a lot more consideration and to be taken more seriously. People with ADHD deserve more than to be regarded as a punchline or told to “just try harder”.
There’s no one-size-fits-all to ADHD. Each person will experience a different combination of symptoms at various intensities. So, that being said, here’s a look at some other aspects of ADHD beyond potential disorganization and forgetfulness.
In most cases, a psychological evaluation is required for an ADHD diagnosis. This lengthy process involves many emotional and cognitive tests and conversations–it’s exhausting. Even with insurance, this process can cost thousands of dollars.
Treatment plans can involve private schools, trained contract professionals, therapy, special tools and resources, medications, reduced working hours, etc. This all costs money, and it adds up quickly. Private ADHD-focused schools, for example, can cost as much as Harvard each year.
Psychiatrist appointments are needed to pursue medications. Depending on state laws, these are usually required to be ongoing for continued assessment–so, another new line item in a monthly budget. Medications are expensive and finding the perfect fit on the first try is uncommon. This could mean paying for several different drugs in a single month and ongoing payments for whichever one might work.
It wasn’t until the late 90s (!) that girls and women were even included in ADHD studies in any significant way. Until this point, it was mostly regarded as something that impacted boys, so girls like myself were just assumed not to be very smart, lazy, or just intentionally difficult. The bulk of my childhood can be summarized by the adults in my life sighing out of frustration and anger, not knowing what to do with me. If I were a boy and my parents had money, maybe there was a chance I could have gotten the help I needed. Instead, I was criticized for years, and people gave up.
A mass of women in their late 30s and early 40s are just now getting diagnosed because we were not given the time of day as children. Things are slowly changing, which is wonderful, but it’s impossible to fully reverse the damage that’s been done to generations of women–women who thought they were mysteriously broken and hated themselves for it.
Maintaining healthy relationships is one of the more complex and essential things we do as human beings. ADHD, of course, adds layers of complexity and confusion to something that already seems impossible at times.
Both parties have more misunderstandings, frustrations, resentment, anger, and hurt feelings. People may feel like they are walking on eggshells around a loved one with ADHD, there can be misunderstandings around motives and actions, chores constantly end in heated arguments and nagging, and impulsiveness drives a wedge between people. It’s an endless list. Even if ADHD has been diagnosed and understood within a partnership, it can still be easy to feel unloved if a partner cannot focus on the same things important to you.
Again, this is all hard enough for the most neurotypical people among us.
Most teachers don’t understand how to approach learning in a way that is accessible to kids with ADHD. This isn’t a slight to individual educators as much as it is to the system as a whole–these kids are often either overlooked or provided with overly basic resources on a tight budget. An undiagnosed ADHD child experiences a damaging amount of “otherness” and criticism due to a lack of patience and understanding.
Concepts of self-worth, abilities, relationships, authority figures, and the outlook on formal education are formed during these years, and you can uncover many traumatic stories related to these foundational moments.
Not only is medication not suitable for everyone, it can take several attempts to find the right one, as I’ve mentioned. Scary side effects can be debilitating, and even successful medications will not address all symptoms–it doesn’t cure ADHD but can make managing certain things more tolerable for some.
From experience, this is one of the more profound yet least talked about struggles. When you’re so often uncomfortable and struggling with things that look so easy for your peers, it’s impossible for your self-worth not to take a hit. The combined impacts of self and outside criticism and frustration, real and preceived failures, self-blaming, and profound daily guilt cause compounding damage that shapes future narratives that seem to validate continued negative views of oneself.
When you have no self-worth, you miss out on a lot in your personal and professional life. Avoiding appropriate risks under the assumption of failure can lead to a very limited life with many regrets.
No one likes to be rejected, but people with ADHD are likely to experience all-consuming rejection sensitivity to the point of emotional and physical pain, resulting in long-lasting turmoil. This can be triggered by events that wouldn’t even register to others in the least. For instance, any level of feedback can feel deeply personal and hurtful, with a complete disconnect from the person’s good intentions.
In a world where we regularly hear about people applying and getting rejected from hundreds of jobs before landing one, try to imagine how this would impact someone with rejection sensitivity.
Having too much energy and nothing to do with it makes you uncomfortable in your own skin–like you manically wish you could unzip yourself and exit. Not being able to focus when you know you have to is uncomfortable. Having symptoms impacted by hormone fluctuations is uncomfortable. Not being able to sit still when you absolutely must is uncomfortable. Knowing you are letting people down is uncomfortable. Having a racing, noisy mind is uncomfortable. Always questioning your abilities is uncomfortable. Being easily bored is uncomfortable. The urge to talk too much and the inability to stop is uncomfortable. Switching between emotions instantly and for unknown reasons is uncomfortable.
It’s not fun, it’s painful. No one would choose to live this way.
A blessing and a curse, hyperfocus is the ability to become absolutely fixated on something in an all-consuming and unbreakable way.
The problem is, it’s not realistic to be able to “be where your head is at” sporadically. Everyone has daily obligations, and breaking this hyperfocus is uncomfortable in a way that causes extreme distress. This attention cannot simply be transferred and cannot be turned on and off at will. Once it’s gone, it’s gone. It’s fragile and frustrating.
If someone with ADHD is actually able to indulge in hyperfixation, what you’ll see is someone who forgets to eat, fails to go to the bathroom, and forgets about important relationships and tasks. So, even when “allowed” to indulge, it can still be uncomfortable and self-destructive. The results of a hyperfixation can be beautiful, but there’s a cost.
“But unrestrained intense focus is most often a liability. Left unchecked, it can lead to failure in school, lost productivity on the job, and strained relationships with friends and at home.”
Unfortunately, those with ADHD are more likely than the general population to also be diagnosed with depression and anxiety, sleep disorders, learning disabilities, mood disorders, tic disorders, Autism, eating disorders, sensory processing disorders, and more.
These are referred to as ADHD comorbidities–the simultaneous presence of two or more diseases or medical conditions in a patient. As if ADHD were not challenging and confusing enough, comorbidities add to this struggle tenfold.
In the desperate quest for dopamine, some people engage in risk-taking behaviors–actions without thought. They cannot fully process the implications and consequences and can hurt themselves or others as a result.
I haven’t, of course, mentioned everything. But even based on what I’ve listed and briefly spoken to here, imagine someone battling ALL THIS while out in the same world that neurotypical people are in each day–a world primarily built with them in mind. People with ADHD themselves or are caring for someone with ADHD are overcoming so much every waking second, functioning and contributing to their families and society. Again, in a world that wasn't built for them.
While I struggle to give myself any credit for success, I begin to understand what a triumph this is in the context of my son. I’m so proud of how he manages. He’s open to learning and changing when necessary but also not ashamed. He’s become patient with his peers and has learned how to “run with” the unique beauty that can exist when a curious ADHD mind is allowed to wander without limits. I’m grateful I was able to spare him, as best I could, from the childhood I experienced.
The books that have been able to help me understand ADHD the most are:
I learned about my own ADHD after learning as much as I could about Ben’s and how to help him. I’ve found ADDitude to be incredibly insightful for adult resources.
I hope this post’s tone was more informative than ranty. I care deeply about this topic and can’t think of many more fulfilling things than ensuring future generations, especially girls, don’t experience this damaging stigma and isolating disinformation.
