Trust Your Gut - Late Diagnosis at 30.

Getting diagnosed was not an easy process for me. After deciding that ADHD was a possibility, I did an insane amount of research. I took self-tests and watched Youtube videos, read studies, explored TikTok videos, and talked to friends and family who had known me for years, as well as friends who have ADHD. It was enlightening, relieving, and upsetting all at once.

My pre-existing depression diagnosis had always been a bit of a stretch. We had labeled my difficulty starting tasks, focusing, getting up and showing up to places on time, and sleep issues as depression. But I accepted that label while knowing that I didn’t *feel* depressed. I had some anxieties and frustrations with my ”unmet potential”. I was always my own biggest and harshest critic. But I didn’t fundamentally believe I was worthless. I didn’t feel sad, except for short periods of time and with a direct cause. I’ve never been suicidal or truly wanted to hurt myself. So while I acknowledged that I technically met some depression criteria and that Wellbutrin helped my symptoms, I didn’t relate to depression in many of the critical ways. I never felt that I had the whole answer in my depression diagnosis.

ADHD was a polar opposite. Where I had struggled to relate to the depression diagnosis, everything I read about ADHD was like sliding another puzzle piece into place. It was almost like reading a biography that someone had written from watching my life. Things I had never even thought of as symptoms, struggles I had never acknowledged out loud or even to myself were right there in black and white.

10 years ago (when I was first diagnosed with depression) there were few studies on adults with ADHD, and almost none on ADHD women and girls. I didn’t fit the preconceived notion of the ”hyperactive little boy with poor grades”, so for 30 years neither I nor anyone else ever thought to apply the ADHD label to me. But as I researched, as I dug deep into the literature and social media, despite my best efforts I couldn’t find anything that suggested I did *not* have ADHD.

In another post I’ll discuss the myriad of emotions surrounding coming to terms with the conclusion that I was one of the many women that was living with ADHD mislabeled as depression. But for now, what’s important is that I felt a need to have someone else - an objective professional who was familiar with both depression and ADHD - look at the things I had found and either confirm or deny my suspicions. I didn’t trust myself to make the call, and if I was right, I wanted to explore treatment options and see if there was something that could help me more or better than the Wellbutrin.

I first started by talking to my primary care physician. He’d been treating me and managing my medications for 3 years or so, and I trusted our relationship. I didn’t want to see a new provider and have them think I was drug seeking.

On the up side, my primary care believed me and agreed that ADHD was a reasonable possibility. Unfortunately, he didn’t feel comfortable and competent to diagnose ADHD in an adult. He was (and is) on board to eventually take over my treatment, but wanted a psych professional to do the initial diagnosis and decide on medications/dosages. He placed a referral for an evaluation within our medical system. I left his office feeling reassured by his agreement and frustrated that I had another wait and another provider to see.

After a few days of not hearing anything from the department he had referred me to, I called them. It very quickly became clear that they would not see me or do an evaluation if I wasn’t planning to do therapy or have them manage my medication long-term. Since I didn’t want long-term therapy and don’t want multiple providers meddling in my medications indefinitely, I wasn’t comfortable agreeing to their terms. Immediately, arguably the best mental health system in the state became unavailable to me.

This was a huge setback. I cried. I was frustrated and angry and felt deeply rejected. When I was able to pull myself together, I started looking for other options for evaluation. Unsurprisingly, there were very few willing to evaluate adults that were within any sort of reasonable travel distance. I began making phone calls (always a difficult task for me), and heard over and over ”we don’t do evaluations, only treatment”, ”we don’t bill insurance, we only accept personal payment”, and ”we are booked for the next 5-6 months - would you like to be put on the schedule then?”. Just as many didn’t answer and didn’t return my calls.

Once again, I felt betrayed by the system. Didn’t they understand that the very disorder that I was trying to be evaluated for made it difficult to pursue an evaluation? The repeated rejections, disappointments, frustrations, and just researching to find options was mentally and physically exhausting.

Eventually, I realized that my college had a Mental Health and Counseling Center. I met with a therapist, who explained I’d need 2-3 more appointments with a counselor before they could refer me to their nurse practitioner, who could formally evaluate me. I began the process, boistered by the belief in my ADHD that the intake counselor had shown. But I was still looking at a 2-4 month process to even be evaluated. The counselor also recommended to me another nurse practitioner in the city who did evaluations, and suggested I check to see if she could get me in sooner. I called, left a message, and miraculously heard back from her office within a few days! I put myself on her schedule as well for about a month later, and continued to meet with the college counselors so I had a back-up plan.

As I waited for an appointment with a practitioner, I stumbled upon ADHDOnline.com. I decided that a second opinion for $150 was reasonable, and completed their questionnaire. Officially, I received a diagnosis of combined type ADHD from their psychologist on 3/15/2022, just one day after submitting my information to them.

Their confirmation bolstered my belief in my misdiagnosis, but I still deeply wanted to sit down with a professional face to face. So I waited, somewhat impatiently. On 4/14/2022, my new psych nurse practitioner confirmed what I was already sure of - I did not have depression. I had never had depression. While there was some comorbid anxiety, my primary diagnosis was ADHD - which meant I had *always* had ADHD, missed by myself, my parents, my doctors and teachers for 30 YEARS. More emotions we’ll get in to later.

To be clear, I’m still not sure my insurance will cover the meetings with my psych NP. She is listed on my insurance benefits, but isn’t recommended by my employer’s EAP, so there may still be an argument or money to be paid. But after 4 months of actively looking, meeting with 4 different providers in person and 1 online, dozens of phone calls and hundreds of tears - validation. I have ADHD.

I am not alone. I am not lazy, or stupid, or broken, or depressed, or a hundred other labels I and others have given me over the years. I have the real name for the struggles I’ve battled in my life. ADHD is a condition, not a character deficit. Knowing that I have ADHD, I can begin the work of forgiving myself and finding the best ways for me to reach my greatest potential with MY brain.

I am a 30 year old woman. I have a degree and a husband and a child. And I also have ADHD. Don’t doubt yourself - a diagnosis from a professional isn’t necessary, but if it feels necessary for you, pursue it. Trust yourself if you don’t identify with the diagnosis you’ve been given. Nobody else lives in your mind, and you have to be your own advocate. The system is damaged and can even feel rigged against those of us with neurodivergence. The system doesn’t make it easy or straightforward to get evaluated, diagnosed, or treated. It may be difficult but, for me at least, it was worth the difficulty to open up a deeper understanding of myself.

I’d love to hear any stories of self-diagnosis or professional diagnosis in the comments. The journey is different for everyone, and I love to hear from others!