Living with ADHD after decades of medical gaslighting

Personal Essay

Living with ADHD after decades of medical gaslighting

I always felt a little bit off-center. As a kid, it seemed like I was dancing to my own rhythm most of the time and I’m undisputedly tone-deaf. I was rarely quiet, with a dangerously persistent curiosity, and nothing was too perilous to try.

My hobbies and vocations changed faster than the weather. At 10 years old, I charged my family to enter a gallery (our living room) filled up entirely with my own original artworks (mixed media pieces of the house cat). I then ditched the visual arts and turned to create a magazine that featured news pieces, poetry and short stories revolving around the household members. In another instance, I turned to the outdoors and decided to open a rescue shelter for feral cats in our neighborhood. My mom intervened quickly with this one after she woke up one day to nine feral cats having breakfast with me at the kitchen table. 

I was having a lot of fun, but as a girl growing up in Kuwait, being an outgoing, outspoken, outdoorsy personality was not encouraged. People labeled me as quirky, clumsy, messy. They randomly tried to give me life management advice. I didn’t use to think much of it, but I internalized a lot of those qualities as I got older without really questioning them.

In my early 20s, during my senior year of university, things changed. I was having increased difficulties living up to my teachers’ expectations, keeping up with coursework, or even being in the moment with friends without feeling overwhelmed. I started thinking these weren’t just quirks, and maybe something was different about me. I decided to ask for help.

I visited the general practitioner at the local clinic and explained how I felt and my concerns about what it could mean. With a sure and soothing voice, he advised me to immediately calm down, he recommended I stop stressing and try to relax. 

I remember feeling relieved that nothing was “wrong” with me, even though there was a part of me that was sure it wasn’t just stress. As the difficulties remained, I remember googling “how to relax” in a naïve attempt to give the professional prescription a go.

At that moment, it couldn’t have crossed my mind that I was just let down by a doctor, but being let down by doctors was going to become my experience for the rest of my 20s. I asked for help from medical doctors a few more times and received no relevant help or advice. I kept having the same feelings; the overwhelming anxiety that comes from sticking to a routine, repeating mundane tasks, hyper-focusing on big projects, the awkwardness of getting to know new people and the alienation resulting from avoiding social life. This time, however, it was also paired with fear as I genuinely believed the problem was that I couldn’t handle stress like everyone else.

Sometimes my friends could relate, but validation from my peers wasn’t enough. Whenever I talked about my feelings to people around me, the responses varied between “toughen up,” to “your life is too simple for you to feel this way,” or some iteration of “when I was your age, things were tougher.” My personal favorite: “It’s all in your head.” 

I knew I needed help, but the fear of not being heard or believed was paralyzing. So I did nothing.

While I should have thought to see a psychiatrist or therapist back then, there were so many reasons I did not seek that kind of help. After a few encounters with medical doctors who dismissed and minimized my experience, my understanding of what constitutes a mental health concern was significantly narrowed. And the anxiety of being gaslighted by a medical professional one more time made me think that whatever I was feeling couldn’t be serious enough for medical attention. 

I remember feeling relieved that nothing was “wrong” with me, even though there was a part of me that was sure it wasn’t just stress.

Around 2018, mental health awareness was growing and many people in my circle started going to therapy, which caused the cost of therapy sessions to skyrocket (about 200USD per session) making them inaccessible to me at the time. Even if I still wanted to give it a try, I had also been hearing about the misogynistic comments and tone-deaf advice my friends were getting from mental health professionals.

To top it all off I wasn’t at all familiar with what neurodivergence meant. The general awareness of ADHD (Attention Deficit and Hyperactivity Disorder) was, and in many ways still is, limited. The research around the persistence of ADHD in adults is relatively lacking, and the data on ADHD diagnosis in Arab countries is still sparse. Even now, according to a recent study published by the CDC (the Center for Disease Control and Prevention), young boys are twice as likely to be diagnosed with ADHD as girls are.

Being let down by doctors was going to become my experience for the rest of my 20s.

The pandemic hit and it was like a giant magnifying glass to my symptoms. The lack of routine made it near impossible for me to find my footing or create any structure. Every day was a new adventure, and every morning I had to figure it all out again. I became increasingly frustrated with myself and my inability to just sit still, or even get used to what everybody kept referring to as “the new normal.”

I experienced the joys of social distancing a little more than most people I knew, and six months in, I had gone through four different new hobbies, all of which were abandoned the moment I got any good at them. And the more free time I had, the more visible my symptoms got. 

In the summer after I turned 30, I saw a video on social media that was meant to be a funny snippet of the life of an adult with ADHD and it stirred an understanding in me. I sent that video to anyone that knew me well, and took as many online assessments as I could in the following days.

Thanks to the algorithm, another video popped up of a woman my age talking about her experience being dismissed by her parents and physicians all her life, how she was finally diagnosed with ADHD at 30, how life was so much simpler now with help and treatment. She encouraged people to stand up for themselves and not accept anything less than a satisfying answer from medical professionals.

The comfort and empowerment I felt from that one-minute video posted on the internet by a complete stranger was unforgettable. I immediately looked up ADHD assessments near me and made a call.

I walked into the psychiatrist’s office with equal amounts of trepidation and determination. I got lucky and found a doctor who is honest, kind, a good listener and validates my experiences, therefore giving me the help I need. Slowly but surely, I got better at reacting to my environment and gaining control of my life.  

Years of medical gaslighting left me with a lot of work to be done towards standing up for myself and trusting my own feelings – and to think, this could have been avoided had I simply been afforded the respect and consideration I was owed when seeking medical attention.

Years of medical gaslighting left me with a lot of work to be done towards standing up for myself and trusting my own feelings

Adding to that, receiving an ADHD diagnosis at 30 is made bittersweet by the fact that I either asked for help and it wasn’t given or that it simply wasn’t accessible to me. But I am grateful to now be presented with different tools to help me create routines that serve me, listen more intently, drown out background noise (both literal and metaphorical), manage my impulses (mainly my spending habits), and enjoy being in the moment. I am fortunate that at this point in my life I have the privilege of having the finances, support, and resources to do that work, to believe in myself and ask for the help I know I need. 

If I could leave you with any thought, it is that unfortunately, a lot of women aren’t so lucky. We all need to be having serious and constructive conversations about women’s experiences with medical professionals. SWANA women already face a multitude of injustices when it comes to access to adequate healthcare including financial and social barriers, limited public awareness on health concerns, medical privacy and autonomy laws that are vague at best to non-existent at worst, etc.. We cannot let medical gaslighting remain another obstacle to overcome after we’ve finally made it into the doctor’s office.

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