All of us who were diagnosed late in adulthood/later in life are experiencing an overwhelming amount of emotions that are quite similar to the 5 stages of grief. But to explain this a little more, I wanted to share what my specific brain variant of ADHD, hypersensitivity and autism does to me and how it altered my behaviors, communication and overall life.
Let me start by debunking the most common statement of “we all have a little bit of ADHD.” No, we don’t!
My brain is lacking two hormones that are essential for executive functions that regulate concentration, impulse control, memory and wellbeing, namely Dopamine and Epinephrine. Our brain works like a computer with 200 tabs open at the same time, which not only means that our brain jumps from one thing to the next without rhyme or reason, but also that we are constantly at war with the environment, because we are overwhelmed by sounds, smells and sights; this is even more pronounced for me, since I am also hypersensitive and on the autism spectrum. Stimuli become unbearable, I would feel like a rat in a cage, brain starts racing and looking for escape, resulting in me getting agitated/aggressive when people would say or do things that were, in my perception, not right/negative, etc.
I would often liken my emotions to a freight train that, once set in motion, could no longer be stopped or steered. But how did it get to that point why was I never diagnosed and what consequences did I experience.
Reading my report cards from school, all the way through my apprenticeship and business school, is painful. Here are the statements, labels and judgments people bestowed on me throughout my life:
– You are lazy. If you only tried a little harder you could be the best/have excellent grades.
– You are combative
– You are too aggressive
– You are too loud
– You are a shit stirrer
– You have way too much empathy, which means you are neurotic
– You are disruptive
– You are intimidating/scary
– You are way too direct
– You need to learn keeping your mouth shut
– You are distracted and need to stop daydreaming
– You are not anchored in reality
– THERE IS SOMETHING WRONG WITH YOU…..
– THERE IS SOMETHING WRONG WITH YOU…..
I could spin this list probably for a while longer but these were the most common statements I’ve heard, the most painful ones and also the ones that resulted in two hospitalizations after having two complete mental breaks that rendered me unable to function and unwilling to live.
When I was a child, no one noticed that I was rarely present (in my mind), because things that really interested me would create hyper focus, and having an endless curiosity about various topics allowed me to get really good grades in school in the majority of subjects, which would make up for the not so good grades in subjects that couldn’t hold my attention or focus, like math, physics and chemistry. However, I did figure out “hacks” to always get by without failing classes and I also knew that strong grades would lead to being successful later in life.
I was also incredibly lucky to have a handful of teachers who saw my potential and recognized that I was ahead in certain subjects. But the real problems started as soon as I graduated high school. I was 17 and started an apprenticeship and gradually my grades started dropping. I was noticing an even bigger drop in concentration, lacked all impulse control and would often “disturb the lesson” with stupid remarks or singing! Having too much stress and dysfunction in my personal life amplified my issues.
It all came to a head when my boss/teacher called me into her office, stating that my open way was refreshing, but if she had 20 of me she’d shoot herself and told me to stop talking, start paying attention, work harder and stop being lazy. She also said that if I wouldn’t shape up, she might have to kick me out. I called my school teacher and told him that I don’t know what was happening and he ended up calling her. I never really knew what exactly he said to her, but after that she championed me and helped me actively graduating and getting my diploma.
The thing is that having ADHD also means that you suffer from RSD – Rejection Sensitive Dysphoria, a condition specifically attributed to the ADHD brain. For us, criticism and rejection cause severe emotional, mental and sometimes even physical pain (hello fibromyalgia). So we develop panic attacks, phobias and depression, which are in turn again, misinterpreted and misdiagnosed by doctors, friends, family and coworkers.
This is how this looks like. You know from a very early age that you are “not normal” and that there is something wrong with you, but you don’t know what. You feel that you do not belong, so you start isolating. Then rejection and criticism start raining down on you constantly. This not only emphasizes that there is something wrong, but also that you are not lovable, that it is all your fault, that you need to try harder fitting in and behaving normally, because you are “just not right and other people can do it too without problem.”
I had constant friction in my life, because I had an extreme sense of right and wrong/fairness, as well as the all or nothing brain that would dictate to either do something or do nothing at all. Were others were afraid to speak or do, I jumped fearlessly in front of the bus, no matter the consequences – but only for other people, generally not for myself.
By the age of 19 I had developed severe phobias and depression, had attempted suicide and was behaving in self-destructive ways. Until I moved to the United States. There I learned the mastery of the chameleon and started mimicking successful people, often even asked them to mentor me. Every advice given I’d take on and apply without question. I also learned a million hacks to mask my “faulty” brain.
Here are some of them:
1. Never enter a meeting with a laptop, or later on cellphone
2. When people talk to me/address me, turn away from the monitor, stop what you are doing and look only at their face
3. Make to-do lists
4. Always put things in the same place/develop designated places for everything
5. Don’t go to parties or clubs with other people, so you can leave when things get too much
6. Never show sadness, anger/frustration, fear, anxiety or that you are overwhelmed
7. Pretend to be an extrovert
8. TRY TO KEEP YOUR MOUTH SHUT
My life was an endless string of rituals, rules and hacks and a constant censoring of myself, while living with the fear and anxiety to make mistakes, or inappropriately open my mouth again. My life was hell, often unbearable, while I felt I was walking next to an abyss and one wrong step would spell out disaster. I was put on most anti-depressants in existence, none worked. I was put on Alprazolam/Xanax for the constant anxiety anttacks and sleeping meds for the never ending insomnia. I was in the ER countless times because I would suddenly break out in hives, have bizarre dizzy spells, or had horrible headaches and would start throwing up until I had no choice but to go to the hospital. Nothing was ever found, besides spikes in blood pressure, sometimes an infection, but usually nothing, which left me feeling insane. Of course, anxiety and panic attacks are not diagnosed so easily.
In 2006 the first true break happened after shoulder surgery and severe stress in my personal life (again) that required hospitalization at the open ward of a psych unit in the same hospital that had just fixed my shoulder. My brain was spinning, I couldn’t stop crying, I didn’t want to live anymore and all I could think was “I can’t do it anymore. I no longer have the strength. I’m so tired, so very tired.” I did have trust in my GP and he had the care and empathy to put me into the hospital.
I was immediately put on a whole slew of medications. There was Paxil for the depression, Ambien/Zolpidem for sleep, Xanax as needed for anxiety attacks and one drug I had never heard of, Adderall, to help me have a bit more energy and stop the suicidal thoughts.
By the time I left the hospital, it was, for the first and only time in my life, absolutely quiet in my head. I was able to listen to people, I had very little or nothing to say and felt at peace. Of course, as I stopped the meds, I also stopped the peace and quiet in my mind.
*It is important here for me to state that I never attempted suicide again and would never attempt it, because my hypersensitivity would never allow to hurt my loved ones by ending my life.
The following almost two decades were riddled with ups, mostly downs and a steadily declining ability to self-regulate and censor. The safe haven I had experienced working for a large company that inadvertently used my neurodivergence to bring out the best in me, was blown away with the market crash in 2008 and me forever attempting to fit into the very neurotypical world of corporate America at various companies – failing miserably. There was a constant string of bad and impulsive decisions I made and the aftermath that would eat away at my physical, mental and emotional health. And then came perimenopause!
Of course, I had no idea until I started having hot flashes. But doctors neither tested hormone levels, nor wanted to prescribe hormone replacement therapy. With the decline of estrogen and progesterone and the inability to produce adequate amounts of dopamine and norepinephrine I started spiraling out of control. I could no longer concentrate, remember anything, stop talking and interrupting and control my impulses or filter at all. In addition, my emotions ranged from shame, hopelessness, deep sadness, feeling worthless and stupid, to anger, rage and such severe anxiety that I was no longer able to leave the house. I felt isolated and was harshly judged. Not a single person, outside of my man, noticed that something was very wrong, or cared enough to ask me and offer help. The last straw was that in one single incident, I lied about something I had said, because I was now terrified of people. I had always been too honest, yet I told one lie and was now also labeled as dishonest. I “fled” to Europe, and broke – completely.
It took over two more years to make it back home to Germany after a brief stay in the Netherlands, where I finally found leaders that cared and a doctor who felt that “we need to stop treating your symptoms and instead find the cause.”
How did they actually find ADHD? I had read an article in the US about 7 years ago that ADHD in girls and women is rarely diagnosed, until we enter menopause! In addition, I had researched Adderall, because I remembered how peaceful my head was after the hospital stay in 2006, and found out that it is the number one prescribed medication for ADHD in the US. I wanted to get tested in the US, but the test was $5,000.
A British friend had recognized that I may have a lack of hormones due to perimenopause, so my German doctors also tested my hormone levels.
Finally, my GP transferred me to a psychosomatic clinic, where I was tested, diagnosed and put on medication – Medikinet, an equivalent of Ritalin, i.e. an amphetamine. I was also taught skills to deal with anxiety, shame and sadness.
The aftermath is that I am no longer the same. I have deleted my Facebook page and avoid social media in my personal life. I learned that I do NOT suffer from depression or other mood or personality disorders.My heart and spirit were shattered, but I am in the process of rebuilding them. I have different priorities in life now and I see the world and the people in it very differently. Most importantly, I finally know that I am not broken or insane, but that I simply am truly wired differently. I know that I have challenges that will forever have to be regulated with medication, and that I will never be neurotypical, but I also have superpowers that can help me thrive.
I get angry and sad because I could have avoided a lot of pain and trauma had I been diagnosed earlier. Alas, I cannot change the past.
