The events in our lives happen in a sequence in time, but in their significance to ourselves they find their own order the continuous thread of revelation.Eudora Welty
At some point in the early aughts, I asked a provider that I was seeing if we could please finally find out what was wrong with me. At that point, it was clear that whatever was happening in my brain was firmly rooted and it seemed prudent to find out what it was. I don’t remember his name or his face. I don’t remember what his office looked like or what town I was in at that time. I do remember his words, though. “Lets not get distracted by a label. What is important is focusing on getting you better. You don’t want to get bogged down by a diagnosis.” This is another example of the many times that the medical complex let me down. I wouldn’t know how badly until over a decade later.
The crazy part is, I went with it. It made sense. No one wants a psychiatric label! I subscribed to it. Though I was open with the people in my life about my illness, I floated through the medical community with “major depressive disorder,” and “generalized anxiety disorder” in my chart and I called it a day.
The thing is, it was never going to work. No matter how long I stayed under treatment, no matter how many hours I spent talking in therapy about how bad I felt, and no matter what combination of medications they put me on…I still found myself in the depths of depression and riddled with anxiety. Time and time again.
After 38 years, some answers.
I had decided, at the beginning of 2020, to ask my doctor for a final diagnosis. I have been seeing her for a couple of years now and I think she is amazing. She is supportive and honest and helpful. Yet, for some reason, I was still afraid. Maybe I thought she would say what the last doctor said. Maybe I was afraid to actually know what is wrong with me. Maybe both.
Either way, a couple of months after my 38th birthday, I sat in her office as she readily agreed that getting an evaluation would be beneficial to me as a human and to her as a doctor who is trying to help me get better. I took the hours long evaluation in September. It was half interview and half written evaluation. Then I waited for the results to come in.
Most of the results were not a surprise. My doctor had given me her suspicions, based off of working with me for the previous couple of years, so I had already been researching the things we had talked about. Still, I wasn’t quite ready for what followed.
First, my comorbidities. A comorbidity is a disease or medical condition existing simultaneously with and usually independently of another medical condition. They were, mostly, already known or not that surprising. I have been officially diagnosed with Persistent Depressive Disorder (PDD), generalized anxiety disorder, PTSD, and OCD.
That brings us to my main diagnosis. After 38 years, 30 of which I spent in the care of medical professionals for my mental health concerns, I have been diagnosed with ADHD-Inattentive, formerly known as ADD. The other disorders are all independent of the ADHD, but they are all exacerbated or were triggered by the ADHD. There was no getting a handle on my depression and anxiety because no one was trying to get a handle on my ADHD.
If you are like me, that probably didn’t know much besides what you could see of ADHD and what you had heard about ADHD. We’ve all heard of it. A lot of us have “joked” about it. We think we know what it is and it doesn’t seem like such a big deal.
My child has ADHD-Combined type and we’ve known for years. She lives with an especially severe form of it and her outward signs are many. Still, I had no idea how it affects a person on the inside. Let me tell you, friends, the ways are vast and varied.
Feelings…nothing more than feelings.
In the wake of an official diagnosis, I felt relief and validation. I found myself pouring over, and identifying with completely, entire threads on #ADHDTwitter and being actively involved in conversations in Adult ADHD Facebook groups. I couldn’t believe my eyes! These people knew me; understood me. They identified with me. I have learned so much about myself, in reading other people’s stories and experiences.
To be clear, for all of my life, I was told that my ADHD (unknown) symptoms were personal failures. More importantly, I believed it. I never brought it up in therapy or to my doctors because I didn’t know they were symptoms of something, other than being “lazy” and “flighty.” I thought I just…sucked at life a little. I felt ashamed of these things. Now imagine being almost 40 years old and realizing that, not only do you not suck at life, but that you have a treatable, controllable disorder. You can fix it. There are no words to describe the emotions of that realization.
Something else happened after that initial diagnosis. I started to feel angry. If I can be frank, and I believe that you’ll allow it, I was pissed. You see, those people that always told me that I was a bundle of personal deficit…those were not strangers. They were people that I loved, respected, and looked up to. They were my parents and my teachers and my bosses and my husband and my friends. I thought of all the times I had been called lazy or toxic or was told I was only “making excuses.”
Naturally, my thoughts then turned to the mental health system and the healthcare system as a whole. I was already keenly aware of how deeply the system was lacking. I have been let down and passed around and grievously injured by my treatment. Now I thought of all the times that I cried and begged for relief. I wanted help so badly and felt so sick. Now that I knew what ADHD was, I realized that it is pervasive in every aspect of my life and my personality. It is, quite literally, unmissable. But they missed it. Over and over again, they missed it. And I paid for that. I thought of that doctor, almost 20 years before, who convinced me that it was better not to know.
My anger turned to fire, deep in the pit of my belly.
In which my path is affirmed
After the last few months, I am more resolved than ever to use my voice to help people like me. Whether it be by letting them know they are not alone, crushing stigma by speaking out about my own experience, or fighting for pro-mental health legislation…this is it for me. This is my mantle. For most of my life, I felt that I was put here for something. This is what it is. I will fight for us. I will speak out for us. I will do whatever I can to make sure that today’s little girls never have to wait 38 years…or 59…or 67…to understand themselves. This is my fight.
I am taking a leave of absence from my job and, in that time, I will be working diligently on myself. I will be working with my ADHD specialist to build an ADHD toolbox, something I’ve never been able to create with intent before, and in therapy to work through trauma and to learn healthier behaviors and coping mechanisms, while also getting stabilized on the right medications for me. My plan is to document all of it. Twenty years ago, 15 years ago, even five years ago, I did not believe that there was a such thing as recovery from mental illness. Today, I am standing at the mouth of the path and it is my goal to share this journey with all of you, in the most open and honest way that I can muster.
Do you have an experience with a later-in-life diagnosis? What spurred you into advocacy work? Let’s talk about it in the comments! I’d love to hear from you!
Here is a list of excellent and real ADHD/ADD resources:
Jessica McCabe – Her YouTube channel is EVERYTHING!! It’s called How To ADHD and you can find it here.
ADDitude Magazine – Great resources on their website.
The #ADHDTwitter, #TeamADHD, and #AskADHD hashtags on Twitter. – Search the hashtag and connect with others, read up on the ways that ADHD affects people in their every day lives, and find resources and tools to help you on your journey.
Writing about living with ADHD and mental illness and my journey down a thriving path forward. Breaking stigmas and creating community, one post at a time.