This personal story is to serve as inspiration for women who are fighting the US Healthcare system to be tested for ADHD not to give up and, hopefully, to shed some light towards healthcare providers when someone wants to talk to you about them possibly having ADHD.
I was diagnosed with ADHD and OCD at age 30. It took nearly a year and 6 different providers for me to get those 7 letters.
I. Went. Through. Hell.
During the last few months of 2022, I met with three different mental health providers. Each one told me I was too old, didn’t meet the criteria, or something similar. They would move on with their questions before I could protest. When I attempted to come back to ADHD, I would always be informed that I had to be under the age of twelve or had symptoms before age twelve.
I attempted to find someone specializing in diagnosing adults with ADHD in my area through Google, but each office I applied for was full. Beginning to think I would never get answers, I started to give up. Maybe they were right, I was too old to have ADHD. However, it was still in the back of my mind and since Facebook can read my thoughts, I was constantly seeing reels about ADHD.
A few months went by and I decided to try once again. Using a different mental health mobile app than any of the previous ones I tried, I scheduled an appointment. The appointment was via video call with a male provider as I had no preference. That was the appointment that changed everything for me….and it was the most awful mental health appointment I have ever had.
Determined for Answers, I Tried Something New.
I went into the conversation that day with the decision I wasn’t going to ask to be tested for ADHD, but that I wanted to learn CBT methods. I had never tried this with any of the providers prior to this appointment but thought it was a good idea since being tested as an adult was so difficult. I wanted to improve my mental health. Just to clarify, at no point was I asking for any medication. I just wanted to see if any of the techniques and methods used for individuals with ADHD would help me.
I explained this to the provider. He was hesitant and of course, wanted to know why. Leading up to the meeting, I could have given him a half dozen reasons why. But when he asked, I was a deer caught in the headlights. This happened every time. I did a quick internet search to try to find an article I had read earlier that week as he continued asking me questions. I was annoyed at myself for not being prepared with a list of reasons why I thought I had ADHD.
I repeated that I had done a lot of research online about women with ADHD going undiagnosed and what the world knew about ADHD was changing. I was still frantically trying to pull up the articles I had read earlier that week to help plead my case. I knew from my research that women presented differently and often went undiagnosed because they were not energetic like young boys. There had been a severe oversite with the disorder due to stereotyping over 40 years ago.
You Are Too Old to Have ADHD.
Like many others, he brought up my age and that I was too old to be diagnosed with ADHD. I informed him that around age 13 my mother tried to have me tested, but they refused to entertain the idea back then, much like now, and tried to label me as bipolar.
I was put on medication back then, but stopped taking it after about a week when I decided that if I didn’t act out then they wouldn’t make me take them. (It worked.) I never wanted medication because I wasn’t crazy. I said no back then and I still very much felt the same way about medication. Plus, I didn’t want the responsibility of having to remember to take it every day. So, it’s not like I was some drug user after a prescription.
Regardless, he didn’t let up. He didn’t give me a chance to gather my thoughts or remember why it was I thought I had ADHD. He just kept pressing for answers.
At the beginning of the conversation, I informed him that I was very intelligent and had previously found difficulties with finding mental health providers that I respected enough to take their advice. This wasn’t their fault or due to a lack of knowledge. Just something I have noticed.
When he caught my frustrations, he repeated my words back to me about having an authoritative figure then continued on. He told me that all he was hearing was that I was having manic episodes and symptoms of bipolar disorder.
That’s When the Tears Started.
I knew I wasn’t bipolar, but no one would believe me. Again, he continued by telling me that I needed to get comfortable with the idea of being bipolar and to stop having so much apprehension when hearing the word.
Determined to prove me wrong, he opened a copy of the American Psychiatry Manual on his computer, one that I didn’t realize existed before this appointment. He began quickly reading off the criteria, saying no after each one.
By this point, I was completely disassociated from the conversation. My responses were mostly just me agreeing or saying “Okay.” I knew we were almost at the end of our 45-minute-long appointment slot and I couldn’t wait to get off of the call.
He noticed the time and asked if I wanted to schedule a follow-up. I knew I couldn’t go through another onboarding call explaining why I was there again. I never wanted to go through what I was currently experiencing ever again. I needed to start therapy and continue with one provider if I ever wanted to get better, so I agreed, scheduled our next session, and hung up.
I, then, immediately started to bawl.
“I’m not bipolar. I know I’m not. I’ve made it 30 years without an uncontrollable manic episode.” I thought to myself. Why wouldn’t anyone just test me? That’s all I want. I’m not looking for medication. I just want to be tested and try behavior therapy. Why was that so much to ask for?
I didn’t dwell in my sad state long, never do. So, about an hour later I was feeling better and decided to hop in the shower.
This personal story is to serve as inspiration for women who are fighting the US Healthcare system to be tested for ADHD to not give up and, hopefully, to shed some light on healthcare providers when someone wants to talk to you about them possibly having ADHD.
All Great Thoughts Happen in the Shower.
Standing there letting the water run over me, I thought back to the conversation I had with the provider just a few hours prior. The shame that caused my tears earlier was gone and I was now angry.
How dare he argue with me? I was a patient seeking help for depression and ADHD. Who argues with their patient? My anger continued to grow while I finished my shower. I decided I was going to prove him wrong during our next appointment.
I hopped out of the shower, got dressed, and sat down at my computer. I went to Google’s scholarly articles and began my search there about testing women for ADHD. On another tab, I searched the American Psychiatry Manual. I wanted to read it myself. With a 3rd tab, I steered myself to ADDitudemag.com, a publication about ADHD and related mental health conditions, since I had previously found a lot of valuable information there.
DSM-V Criteria for Diagnosing ADHD
The National Library of Medicine was one of the first websites to pop up in my search for the manual, which I now know is called the DSM-V. I found the page discussing ADHD and began reviewing the criteria. Immediately I noticed the issue: “several inattentive or hyperactive-impulsive symptoms were present prior to age 12.” Well, it’s no wonder why women can’t get diagnosed. Most of their symptoms don’t appear until they reach puberty.
It’s also important to note that this not only directly contradicts all recent ADHD studies done in the US, but also the criteria for diagnosis the rest of the world has. Europe is the first to recognize that ADHD extends into adulthood. Which led me to wonder when the criteria for the disorder were last updated.
It hadn’t been updated since 2013. We are in 2023. So, back to the scholarly articles I went to find recent studies on ADHD.
My search brought up findings on recent studies that had been done on women with ADHD. I started sifting through the different articles looking for any that would help plead my case. I stumbled on an article for my state teaching hospital, Oregon Health & Science University. They had a provider there that was a leader in diagnosing individuals with ADHD later in life but more specifically in researching women with ADHD. Perfect.
My determination led me to compile a list of resources, scholarly articles, and even videos all about women with ADHD. How long did it take me to do this? About two hours with read time.
Pondering My Findings.
Over the next few days, I couldn’t help but think about two things. The first was how quickly I had found this information in comparison to how many providers I met with who were clueless about the disorder. Meanwhile, I spent 2 hours researching the disorder, compiled a list of links to scholarly articles done around the globe, found numerous websites dedicated to women with ADHD, hundreds of books on Amazon, and yet still I had 4 providers tell me I was too old.
From where I was sitting, I now knew more about the disorder that I was supposedly too old for than any of the providers I met with. I had nearly every single system, yet, I couldn’t get tested.
This thought wouldn’t go away as I approached my follow-up appointment date. Did I want to deal with trying to convince a provider who already proved he wasn’t willing to hear me out or learn about the topic? Not really. I just wanted to learn about my disorder and be tested.
I canceled my appointment. I didn’t want to meet with him again.
Shortly after canceling, I remembered OHSU was a leader in researching women with ADHD. Back to Google, I went to see if I could find more information on this study. I wanted to know if I could get into it. If my medical records could help other women not experience what I had been going through that past 9 months, then hell yes. Sign me up.
I found the page for ADHD on the OHSU website. They were accepting new patients but only by referral.
Crap, I was going to have to meet with that therapist again to get a referral.
I let the idea sit in the back of my mind for the next few days. Then one afternoon, I realized it didn’t have to come from a mental health provider. The referral could come from my primary care provider. She and I got along great. I called and scheduled a telehealth appointment for a few weeks away.
Convincing My Provider to Grant Me a Referral
I called into my appointment that day and informed my provider what was going on and what I had been through up to this point. Let her know I found a place that tests adults, with openings, and I just needed a referral. She was naturally hesitant, which is no surprise with everything I went through prior to this. However, she was familiar with the idea of late diagnosis. She asked me to take the Copeland Test and email her the results.
My results showed that I had a high chance of having ADHD, however, the test I took was directed towards children.
I decided to wait a few days and then retake the test. I had a similar score which remained at a high probability. I emailed my provider the results to which she obliged with my request and sent the referral to OHSU.
OHSU called me within a day of receiving the referral to schedule my appointment. After a very confusing registration process, I was on the schedule for an appointment over 2 months away. I was excited and nervous at the same time. Excited to finally have answers, but also nervous about what happens next.
The Diagnosis
Time flew by and the next thing I knew it was the day of my appointment with OHSU. I hopped into the video call, nervous, and started talking to an older gentleman. He asked me a few questions and then emailed me two different tests. While on the phone, I verbally gave him my answers for each test question, if I didn’t understand he would give me real-life examples.
After the two tests were completed, he told me I was very ADHD, but not just that. I was OCD. He provided me with a recommendation for treatment and we ended the call.
I didn’t know how to feel. A bit of shock, but more so a sense of accomplishment. Finally, I proved all those people wrong. It didn’t take long before I started to feel a bit lost. Okay, so treatment plan, but what do I do with my brain?
I’m still figuring that part out. However, the more I understand my ADHD, the more I realize how it has affected and is affecting, every aspect of my life. My relationships. My jobs. My motivation. It’s the reason I thrive in chaos.
I’ve been learning to recognize the not-so-glamorous side of the disorder, like my extreme fear of rejection and my emotional dysregulation. But it’s still tough when you collide with someone that just doesn’t get it. I have high hopes that it will eventually get easier. I mean only way to go is up from here.
How I Knew the Difference Between the Two Disorders
For me, the emotional outbursts were always triggered. I never would go through periods of time where I would be wild and reckless or completely evil. If I was being a complete b**ch, something happened that caused me to act like that. Most of the time I’m an upbeat and happy person.
Other Big Clues it Was ADHD
The other big one for me was when I discovered I had a massive fear of rejection that caused me to be a huge people pleaser. I was constantly getting burned out trying to make everyone else happy around me. My friends would walk all over me and I would let them. Employers would expect an insane amount from me, which I would accomplish, yet didn’t pay me for it.
Lastly, I dropped out of both high school and college because I could not sit in class. I would have anxiety attacks and completely flip out and leave every time. It was awful. I just couldn’t stand the thought of sitting there.
Tips for Anyone Trying to Get Diagnosed
Hopefully, my story can provide some inspiration for other women, or men even, who feel like they will never get answers. If you are trying to get tested for ADHD, do the research, write down your signs and symptoms, and bring those with you to your appointment. Put them in the notepad of your phone so you don’t lose it. Being able to refer to a list when you go to your appointment and they ask “Why do you think you have ADHD?” will help you to not freeze up.
Have a diagnosis and looking for tools? Check out these resources.
If you made it this far, you’re a rockstar. I have a habit of being long-winded. This appears to be no different. Thanks for listening!
