After being diagnosed with fibromyalgia nearly 15 years ago, I found a page online describing how the disorder affects a person and showed it to my then-boyfriend, so he could better understand what I was experiencing. I recall him looking at the screen, then turning to me wide-eyed, as if I were an alien.
"What?" I said. He explained that what he had thought of as quirks of my personality — feeling emotions intensely, being sensitive to cold, feeling an urgency to get away from things that cause discomfort, like too-tight clothes or scratchy blankets — were actually just symptoms of an illness. He joked that fibromyalgia was my personality.
I remember being hurt, not because I thought he was mean, necessarily, but because he was speaking one of my budding subconscious thoughts out loud, forcing me to view it directly for the first time. It is a very strange experience to go through years of life thinking of yourself as a unique human being, then find out that large swathes of your experiences and behaviors fit a profile, specifically, a profile labeled as "illness."
Recently, I've been similarly jarred by another diagnosis, one that I suspect accounts for much more of "me" than even the fibromyalgia label did. A couple of months ago, I accepted that I have attention deficit hyperactivity disorder (ADHD).
ADHD explains a lot, like my tendencies to finish work just before it's due, stay up late at night, overshare personal information in conversations, lose my phone and keys, constantly generate new ideas, daydream often, dislike authority, blurt things out without first thinking about how my words may impact people, struggle to manage money, spend impulsively, feel devastated by break-ups no matter how short the relationship was, feel like I'm never quite living up to my potential, struggle to manage my emotional reactions to situations, and so on and so forth.
I've been resisting this diagnosis for a long time. Six years ago, my past therapist was the first to suggest that I have ADHD. I disagreed. When she wouldn't stop bringing it up, I stopped seeing her.
Then last year, my current therapist, whom I trust and like more than the previous one, mentioned that she thought I could have ADHD. But after she diagnosed me with premenstrual dysphoric disorder (PMDD) around the same time, I asked that we lay the ADHD idea to rest. My ability to focus is most severely impaired one week during my menstrual cycle, I reasoned. PMDD on top of fibromyalgia and generalized anxiety disorder explained enough, I decided — all three disorders, according to their diagnostic criteria, cause attention problems.
Except, with time, it became obvious that the plethora of diagnoses I already have did not explain everything (I’ll spare you the names of them all, but it’s a list of twelve! WTF!). Even though I didn't want another diagnostic label, I realized that if I did have ADHD, then that would remain true whether I accepted having it or not, and it’d be better to face it and work with it than continue living in denial. I asked my therapist for an assessment.
Once I began digging into ADHD literature, I learned about how ADHD plays out differently in women and, as a result, often goes undiagnosed. I learned that women with ADHD often develop anxiety disorders, and anxiety can help them mask ADHD symptoms and project "normalcy," despite the often immense issues bubbling beneath the surface. I learned that women with ADHD are often misdiagnosed with anxiety, or, if they have both ADHD and anxiety, only diagnosed with anxiety. I also learned that ADHD is very common among women with fibromyalgia and PMDD.
At some point in my reading, I went from, "Hmm, I guess I do have that, a little bit," to "Is there even one part of my personality that cannot be attributed to ADHD?!" Adding ADHD to the list brings me up to twelve diagnoses total. Hence, the title of this newsletter: Am I a Human, or a Dozen Diagnoses in a Trench Coat?
My many diagnoses help explain why I felt resistant to the ADHD label. Because I've spent so many years feeling as if I'm living in a body that has something "wrong" with it, I think I just couldn't face that there might be something "wrong" with my mind, too. I've always prided myself on my intelligence and long identified with my mind, often trying to live in the mental rather than physical realm as much as I could.
I'm beginning to unravel not only the ways in which I’ve been subconsciously practicing a lifetime of anxiety-driven ADHD symptom masking behaviors (according to the diagnostic criteria, ADHD must develop before age 12), but also how the various coping strategies I've adopted have negatively impacted me. Masking is exhausting and can lead to overworking, fatigue, and burnout.
At some point, the big "aha" hit me: as a developmental disorder, my ADHD preceded both generalized anxiety disorder and fibromyalgia in my life. That means that ADHD, or the strategies I developed to try and live well despite ADHD, could very well be major contributors to fibro and GAD, what I’ve been viewing as my “main” issues. Although I waited a couple months to digest this before writing publicly about it, I will say the situation still feels like quite the tangled web! But, to mix metaphors a bit, I’m eager to keep pulling on the thread and see what else I discover.
There's so much more I could write, and in the future, I probably will. About how the medical model and our society's ableism and healthism often lead us to resist diagnoses and treatments that could ultimately be very helpful and transformative to our lives. How capitalism, sexism, and individualism make life so much harder for people with chronic illness or neurodivergence. But for now, I'll just say, I'm so grateful to finally be at this point of self-awareness and self-acceptance. I sense it's a major turning point, even if I don't quite know which way I'm turning just yet.
I am liquidating my Etsy shop inventory! For the next month, I’m running a sale that’s 30% off 3 items, 40% off 4 items, 50% off 5 items, 60% off 6 items, and 70% off 7+ items. If you’re interested in postcards, stickers, or greeting cards I designed, check it out.
I love the way you write about this. I think about this all the time, too -- like what makes us who we are and how important all those factors are in the way we interact with the world. Like sometimes I think of "x is my whole personality" in a bad way and then other times I'm like, yeah, and so what?! What else am I supposed to make my personality?! Anyway, great newsletter as always!