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ADHD: The Grief of Discovery

kspeakman profile image Kasey Speakman ・5 min read

Mourning the loss of the person I might have been.

This is a followup to I have ADHD 🌧️. There is a strange phenomenon where the discovery of having ADHD late in life is followed by a grieving period.

When I was first told I had ADHD it was surprising to me. I had heard of ADHD and made some assumptions about it. I thought it would be an add-on diagnosis to the problem I really had. But it turns out that ADHD is quite serious by itself. If it is unmanaged, it can ruin lives. And it certainly has caused a lot of problems in mine.

ADHD carries with it significantly higher risk of substance abuse, incarceration, divorce, suicide, bankruptcy, traffic accidents, and many other bad outcomes. More on this in a later post... if I can concentrate long enough.

I was overjoyed to finally know what was wrong and that there are ways to manage it. But the joy was short-lived.

Fundamentally, ADHD leaves you feeling not good enough for the rest of society. Especially for someone like me who was diagnosed as an adult. I spent years trying my hardest and failing at the most basic tenants of modern life: structure, order, consistency... routine. I could not help but feel that I was missing some vital human quality that everyone else has. It not only affected my behavior in the present, but also my outlook on what is possible.

For example, in early childhood I was overly talkative and frequently got in trouble for it at school. Not only that but it tended to annoy other kids, and they unsurprisingly reacted with negative reinforcement. I became very socially reserved and anxious. I knew that I could not get social situations right. So I had to change how I approached it -- now with a lot of caution and fear. I became more isolated and did not have many friends. The ones I did have, I typically did not spend much time with outside of school obligations. Because hanging with me could be exhausting. The high school years were very hard.

I was told I had intelligence. But I did not feel smart. How is it smart to not do your homework or study for tests? I had some classes that interested me so I was easily able to do assignments and excel in those. This was evidence that I could do well "if I tried". But all my other subjects were a cold war, waged internally and externally with my parents and teachers. As much as I wanted to prove I was the intelligent person others believed I could be, eventually I was choosing easier classes to avoid the conflict.

I had dreams of going to MIT, which to me was the pinnacle of technology schools. But I knew there was no way I could get accepted there, much less complete a degree. For all my gifts I could not even manage high school well, graduating with a middling rank in my class. My 4-year college degree took 9 years, off and on. I finished at a local college and really only with the help of my classmates who had formed a study group.

I am thankful for that local college and my classmates or I might never have finished my degree at all! And in the 9 years it took, I ended up with 3 majors.

To top it off I had an addiction to video games. I could not get enough of them since I got my first Nintendo around age 10. Now I see it for what it is, self-medicating that missing dopamine. But at the time I and my parents thought it was the crippling illness that hindered my life goals.

Goals is the wrong word. I never had goals. The act of making goals is just laying a minefield of disappointment for future me. I think the right word here is potential.

The Me that never was

So at this point I go from being joyful at the discovery I have ADHD to morbid grief. The person that I was growing up never had a chance. Their own brain was fighting them tooth and nail. And that traditional future where they realized their potential is gone forever. It wounded me deeply, like the loss of a twin brother. I spent a day crying over it.

It would be easy to reach for blame here. I mean it is always the parent's fault right? Shouldn't they have seen it? Or the teachers? Well not really, no. Considering the knowledge of ADHD was not widespread back then and my brain lives to adapt (and trying to appear "normal"), it would have been hard for them to see it. When I look at how bad outcomes can be for unmanaged ADHD, I think my parents did a great job by giving me boundaries and a compass to keep me away from most of them.

The Me that is

The good (?) thing about ADHD is that I lose interest in things, including grief, quickly. (Plus I didn't actually lose someone.) I'm sure it will come back up now and again (like it did while writing this post). But there is no use playing the What If game. Also taking stock of today, I am doing well. Not sure if y'all heard but experienced programmers make a decent living. And I have managed to form meaningful relationships and keep them, by the grace of God.

So the right question is what to do now.

Well you are reading it. I am sharing my story and raising awareness. A lot of people still think ADHD (and mental health in general) is like having brown hair, not a big deal. Or like the Easter Bunny, not real. Or like the opioid crisis, a pharma conspiracy. Or like spoiled kids, a parental problem. It is none of those things. If unmanaged it can devastate lives, not just of those who have it. It is torturous to watch a loved one struggle and self-destruct!

So my call to action is to educate yourself. Not every problem is going to turn out to be ADHD. But if you've done everything you know to do and still just "don't feel right" or "can't do right" talk to someone who has the training and tools to help you figure it out. And if you have kids who are struggling in that way, get them to the right people. Why waste another moment?

Managed ADHD is a gift

I forgot to add this part initially.

From what I have researched many people with managed ADHD (through medication or developing skills or both) are glad to have it. We tend to have certain characteristics that make us really good at specific and rare things that society and businesses need. Even though mine is not managed to the degree I want, I know that I bring a unique x-factor to our team that helps it succeed.

I'm left to wonder whether thinking differently is intrinsically a disorder or whether modern society just hasn't got around to making space for us yet.

Discussion (11)

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brandelune profile image
Jean-Christophe Helary

I think it took me about the same to go through college. ~25 years later I decided to resume studies. I'm 50. I'm still dead scared of not managing. And the last 20 years were not exactly fun either. Your last sentence is spot on. Modern society is not working. The definition of normality serves only the purpose of putting us into acceptable boxes. We are not the issue.

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brandelune profile image
Jean-Christophe Helary

A friend just posted that on FB:
medium.com/the-innovation/adhd-wor...

I'm suspicious of apps, because I've spent the best part of the last 20 years being distracted by computers. I'll check the note book method...

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kspeakman profile image
Kasey Speakman Author • Edited

I find myself being very resistant to using apps. I think it is because whenever I've tried to use assistive tools, after a while I just stop using them. They become oppressive to me rather than supportive. And a cycle of self-loathing ensues. To that point, I have pared down the tools in my life to where I only use as-needed tools and just for their core functionality. I customize my desktop and editors as little as possible to still be suitable for the task, for example.

Something I have found helpful when I am doing support work is a written log. This helps make up for the fact that my working memory is limited. But when I am coding I just use code comments to augment working memory instead. I have always thought my coding process was probably strange. It's like a shotgun blast of bits and pieces that I code and then wire together at the end.

I cannot manage to make (or accept from others) personal TODO lists. For me these provide negative pressure to perform the tasks that make them impossible to focus on. Although when someone asks for in-person help, I cannot help but do so enthusiastically. Friends and family ask me to fix their computers and I tell them plainly. "If you give me this computer to work on in my own time, it will never get done. If you invite me over or sit with me while I work on it, I can take care of it on the spot." (I never charge for it.)

I believe I am going to need medication for times when life demands more structure.

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brandelune profile image
Jean-Christophe Helary

I understand what you say about tools. Since I've been on a mac (system 7 ?), I've always tried to only use the out of the box applications and limit the rest to the strict minimum. The log idea is good (even comments in the code) but I've never been able to stick to one method. I decided to go back to school this year and I need to work on a thesis, and I'm honestly panicking already. I don't think I was always like this, so it's double scary. I don't even know the origin of my current state and even though I'm regularly seeing a doctor I never asked formally to be checked for ADHD or other issues. There are social obligations that I just can't fulfill. It is really weird. Medication did help for some issues, but not all of them. But it's definitely a relief, unless you come to think that you can't live without it, in which case it becomes a burden.

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kspeakman profile image
Kasey Speakman Author • Edited

Wow, I feel what you are saying. I tried to go back for my master's degree. I believe you can do it, but you will have to work 10x harder than the next person because of having to fight your own brain. It does not seem fair. At least you are not alone. Lots of us out there. I dunno how things work in Japan, but finding a root cause diagnosis might entitle you to accommodations in universities. These are exactly for people whose situation has made it extra difficult for them.

My understanding is that diagnosing an adult can be challenging because we have layers of adaptation. For example, I developed social anxiety I think because my default mode (vomiting words indiscriminately) drives people away. Depression too because I consistently fail to meet basic expectations. But anxiety and depression probably aren't the core issue. (Although still responses I'll have to unlearn.) But that's me. For some people those are the root cause or something other than ADHD. Working with a professional can be a big help to figuring it out.

I hadn't thought far enough ahead about being emotionally dependent on medication. I can see that happening and being burdensome. I think a major key for me is finding a position that plays to my strengths and limits the things that my brain naturally fights. Then the medicine won't feel as required for everyday life. But we will see. I am still trying to find that position. I believe it is really common for non-typicals to be entrepreneurs to create that job. Not sure that is for me though. What about you?

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brandelune profile image
Jean-Christophe Helary

The scary thing about medication is when you realize that, well, maybe you just can't live without it. Mine was for the superficial effects of depression, because I never asked for anything but that. The doc said clearly that medication would not cure me. It would only make the pain bearable. But that was already huge. He showed me graphs where clearly people only on medication had a very hard time "curing" themselves out of the pain. There were better results for people who did medication and sports, but not hugely different. And then much better results for people who did only sorts...

But I was never a sports guy. I don't like to run, I never did what the "guys" do to "keep in shape" or whatever. What I did when I was a super skinny guy out of HS is just start doing Japanese fencing in uni. I had this idea that it was cool, because my History teacher in HS had been really impressed by a demo he saw and I really loved the guy. So when I saw there was a club in Uni, I just started. And I loved the atmosphere so much that I dumped maths and started Japanese, "just in case I go to Japan to practice during summers or whatever". And I've been in Japan for the best of the last 25 years (and even though I'm pretty fluent linguistically and "culturally" the culture shock is still overbearing)...

So when the doc told me "sports" I thought, that maybe resuming kendo, which was synonymous with some of the best years in my life, at least in France, could probably lead to a better place. And that's what I did. I think I was able to stop medication 3-4 years after, which is October of last year... Which only means that I don't feel as much in pain with depression (which is still hidden in some places that I'm not sure I want to explore... :) ) But I know that there are other issues I need to work on to achieve a much better (read sustainable) balance.

I'm not worried too much about university. I'm doing distance learning at the moment and it is sufficiently cheap that it is not a financial burden. The only burden is being organized /focused so that the endeavor is fulfilling. I remember reading "Lost connections" last year. Just being able to put words and processes on what I was experiencing was a huge help. Experience may differ depending on your causes, but give it a try. When you know the monsters, or where they hide, they are easier to fight, or to avoid.

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kspeakman profile image
Kasey Speakman Author

Thank you so much for sharing your experiences. ❤️ It helps me. Much care and blessings to you.

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kspeakman profile image
Kasey Speakman Author • Edited

I wanted to offer one more thing. There is a book called Delivered from Distraction. It was recommended by my therapist and I just started reading it today. Here is an excerpt, starting with an example conversation.

PATIENT: The worst thing of this ADD thing, or whatever you doctors call it, doesn't make it into the medical books. I've read descriptions online. They make it sound like a shopping list of symptoms, you know, forgetful, disorganized, can't be on time, so on, so on, blah, blah, blah. The people who write that don't know the real hell of having whatever this thing truly is. I never have a moment's peace. It's like I have a radar, always on the alert for: What have I done wrong lately? Who's mad at me? What disaster is going to hit out of the bleeping blue sky? That's what most people don't get.

DOCTOR: What exactly is it most people don't get?

PATIENT: Yeah, that's part of the hell of it. Do you have any idea how hard it is for me to explain all this to you? It's like doing surgery on myself, and without anesthesia. What I'm describing to you is like a malignant form of insecurity, like no matter what, no matter where I am or what I am doing, I am always in danger of falling into a pit of despair and depression. For no good reason. My imagination dreams up some failure, some rejection, based on some tiny scintilla of evidence, which I then blow up into a freakin' apocalypse. It's like my life blows up in my own mind every day, usually several times a day. None of your pills help me with that.

  • Delivered from Distration, Preface xxxiii

The patient goes on to talk about how alcohol, marijuana, exercise, sex, etc help temporarily but are not sustainable. I haven't read much past there yet. The point being that this book seems to "get" me. Maybe it will get you too.

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brandelune profile image
Jean-Christophe Helary

Thank you. I'll definitely check the book.

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v6 profile image
🦄N B🛡

How interested would you be in interpretations of the biology of ADHD, and ways to ameliorate its effects based on research, even those that most would consider politically incorrect?

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kspeakman profile image
Kasey Speakman Author • Edited

I have a feeling this conversation would involve the power flower. (Yes, I had to lookup a funny synonym.)

I intend to ask in a future post how people have self-medicated their ADHD. My guess is that most people who have it have self-medicated in some way. Our brains crave that missing dopamine and there are a lot of different ways to get it.