Edit: A great point made in the comments I want to highlight; while it’s perfectly normal to grieve, it’s also perfectly normal to not grieve. If my points relate to you, look into it a bit more and consider it, but if not - and you don’t connect with it - don’t be forcing yourself into a headspace, we’re all different!
I think this is a very important and not very discussed topic. Dr. Barkley put out a video about this on YouTube a little while back, and I’d already started considering this well before and I was excited to see it backed by his experiences. I think it’s quite important because it can help to make sense of different reactions and feelings and try to gain some clarity.
In short, upon getting diagnosed for ADHD, you very well might (I can’t say likelihood) experience some “stages” of grief (order not a given) - denial, anger, bargaining, depression, acceptance. These phases can come and go, and come back again, and Dr. Barkley has a going recommendation to practitioners to discuss this as part of their diagnosis, but they often do not.
I’ll just give my own experience here and I highly recommend checking in with yourself / your supports to consider if you might be in this place and needing clarity, and I hope it’s helpful.
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Diagnosis: I was original diagnosed with ADHD as a differential diagnosis, but received no treatment. Things continued getting worse, and eventually a new psychiatrist said it was clearly ADHD and started medication.
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Fake Acceptance 1: I was willing to say I had ADHD, and discuss my symptoms and share experiences. It was all surface level.
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Denial 1: The diagnosis was short; I’d had the differential, but I was surprised how quickly he prescribed me medication. I took the medication, and things were much better (early meds euphoria) but even still, I thought I was probably placeboing. I straight up thought my psychiatrist had prescribed a placebo to placate me just complaining about everyday things.
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Anger 1: No, these meds are helping - and they could have helped me for so long. Tens of thousands of dollars in tuition fees from missed deadlines, rent overpayments, not making reimbursement deadlines, late penalties - decades of deep depression, burnout - when it was so obvious. Why wasn’t I checked out? Why did my first psychiatrist give up on me? Why didn’t my parents ever notice the many signs?
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Denial 2, Bargaining 1: Maybe eventually I can just develop the systems I need to get by, I won’t need meds, or maybe I will, but I’ll be able to be at 100% without ever exhausting myself or anything. Maybe this is just temporary, and I’ll develop the things I need to get through it. Maybe there just wasn’t childhood signs.
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Depression 1: But there were. There were signs, the meds help a lot but they don’t solve everything. It sucks. It’s unfair, I’m tired, I need a break.
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Acceptance 1: After a bit, I started to really feel like I had a disorder, and it was here to stay. Not only that, but the way that I think is fundamentally different from the way most people think, and I will not relate to most people on a deep level because it’s been so core to me. I appreciated those I could connect to deeply, and recognized that things are just going to be harder. Society doesn’t need to change - I mean, it could - but it’s my responsibility, my burden, but that’s okay.
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Denial 3, Bargaining 2: … but, if I just set up my calendar, and set up alarms, and commit to things, we’re good! No issues, I’m sure.
Great post but I just wanted to say it’s also ok not to feel grief. I was diagnosed very late in life (late 40s) and I’ve felt nothing but relief since getting on meds and finally having a reason for so many things I struggled with in my life other than “something is fucking wrong with me”.
Point being, let yourself feel what you feel!
Same here. I was diagnosed at 38 and it was a relief. My whole life, I just thought I was quirky or something. I couldn’t understand why no one else thought the same way I do, bouncing between 5-6 independent discussions constantly rattling around in my brain at any given moment. Or why people didn’t have to mentally prepare and practice for routines in advance before everything they did. Or why they couldn’t focus solely on a task until it was 100% complete. (I have the hyperfocus type of ADHD, where nothing else appears to exist around me until my main task is completed)
Being able to put a definitive label to my “personality” helped me to understand my quirks and odd behaviors, and adjust to make myself more productive in my life and better at communicating with others. It was a relief to be able to finally know what’s going on with me and have options to improve myself.
In the end, I chose not to be medicated because my type of ADHD makes me highly productive. I’m afraid medication will just cloud my mind and make me only focus on one thing at a time instead of mentally multitasking. But knowing that I have ADHD makes me hypervigilant to my quirks and helps to ground me and pull me back when I notice I’m starting to lose myself in a project or discussion.
Exactly this, it was a weight of my shoulders!
I got a diagnosis a few years back ago and also felt relief, as it explained so much. Same with a recent alexithymia diagnosis. I’m still raw dogging life because our medical system is trash but at least now I know what’s going on.
Agreed. I did have grief about my ASD diagnosis for a short time but adhd I had none whatsoever. I think it has to do with how you perceive the stigma of the condition.
I do think stigma is a part, both your expectations of others and the expectations on yourself. I had a psychiatrist tell me years before my diagnosis that I was “too successful” for ADHD and that pretty much derailed the acceptance for a long time, heh.
I was just diagnosed a few moths ago in my 40’s and I do not grief the diagnosis itself. Its a relief in many ways.
I feel like you with things I struggled all my life. There is a reason for these problems, a real neurological issue that i might be able to work on. Its not because I’m just a failure as a person.
But I do grief a lot about the past and what could have been. All the times life was just so hard and painful.
I have ADS with hypoactivity, which means that all the energy that make hyperactive kids unable to sit still all goes inwards into selfdoubt and insecurity.
I was so, so suicidal and full of selfhate especially during my teens, but also in phases over the rest of my life. I knew there was something wrong with me and I felt so misunderstood and unloved most of all,i thought I didn’t to be loved and understood… and the thought that all this did not need to be that hard makes me cry almost every day.I don’t have any advice to give you, only empathy. Been through a lot of the same feelings and thoughts. Don’t give up on yourself. I sometimes think about all the things I would have missed if I had gone through with some of my darker plans.
But then again I never would have had to sit through the last 3 Star Wars movies. Pros and cons.
(Hope a little laugh helps you feel better)
I definitely feel like a big part of what I’ve grieved is the childhood that I never had, moreso than the future I won’t. It was a big relief, and I felt like I could do well and cut myself slack. I’m just trying to do the same with past me; cut myself that slack, give my past self that love and understanding now that I didn’t get then, accept it was a brutal time, and that it was unfair, but that I’ve grown and learned and stopped rejecting that person was me, and we’re doing all right.
Absolutely! Important to recognize you’re not “weird” for not going through this, sometimes it just aligns so well you’re already prepped for it.
Great post, but I did get thrown for a loop with the word placeboing, which of course I read as place-boing…
Hah, yeah, I’m sure I could have taken time to phrase it better.
That would be a great name for those trampoline parks people take their kids to!
Haha love it!
When it hit me, it hit me like a truck. I was diagnosed around 35, and after bouncing through the relief, euphoria, and anger (pretty much as OP described them) I was hit with a crushing sense of loss - I literally felt as though someone close to me had died - but who? I was fortunately in therapy as part of my diagnosis, and it took the doctor to say “Who died? You did.” for me to understand. The person I lived my entire life as had ceased to exist - that was a very unhappy person, constantly struggling, constantly suffering for reasons they couldn’t see. But it was me, and now they were gone. It was a brutal experience, but it gave me the freedom to start redefining my life.
That’s an incredible way to put it. I am definitely not the man I used to be, but that’s not a bad thing for me as it’s been an almost universal improvement. I do sometimes think back about ‘past me’ and feel a sense of loss about what could have been, especially when it comes to some of my relationships, but for me it doesn’t rise to the level of grief. Just…. wondering how things might have turned out instead.
100%. Great way of putting it. I bounce back forth on occasion, but the trend line is always toward accepting that old part of me, and realizing it’s okay to move on because it’s a very closed chapter that’s been outstaying its welcome. Like any death, you still have those same neural patterns, and they’re slowly getting overwritten, and it’s confusing and disorienting when your muscle memory reaches for something and it’s not there.
It’s extra confusing when what’s reached for is that feeling of not grabbing anything, but you do. When you’ve been falling for decades the ground feels weird for a while when you land.
I feel you, though it is not as bas for me as you described. I was lucky. My wife sat through the whole journey. She’s rock solid.
Got diagnosed at age 26. (I’m 42 now) Straight on the meds. Side effects were intense but the awareness was mind boggling. I experienced focus for the first time in my life. Side effect was I was experiencing focus the whole time. Worrying was something new. A potential black hole caused by CERN in Switzerland was my main focus. I was on my way to a sabotage the whole plant. Big out bag ready and all. Fortunately my psych asked for side effects and I quit the meds for a few weeks. All settled down bit I was scared.
Then the acceptance came. I reorientated. Pushed myself through evening classes and got my master in public management. Because of the awareness I made it.
Got into a management position three years ago and thing fell apart. 6 Months ago I was on the verge of burnout and went to the doctors’. Told my story and now I’m on meds again. A low dose but it’s awesome. It’s the hand on the back that supports me and not the strong arm that pulls me like before.
I’m angry. At least, I used to be. Because the signs were clear and none of my teachers saw it. They are on the front line, they should’ve noticed. They told me I was lazy, even stupid and I believed it. I wasted a lot of years in shitty jobs but now I’m on track and functional. It took way to many years to realize how it affected my family life. As I told before. My wife is a rock.
The only thing that I wat to warn about is that the meds take away you good traits too. Make sure the dose is right. I’m creative and I don’t have a box to think outside of. I had interests… Way too many so I know a lot about a lot. That is my strength. The meds mess with that part of me but when well balanced ADHD is my super power.
Take care. Love you all.
I think a lot of us went through that in school. “You’re so smart, why can’t you just apply yourself?”
Because my brain is wired different and your class is boring as fuck, Ms Billman! Also stop getting mad when I point out the errors in your lesson. You insecure piece of shit.
But I’m not bitter. 😁
Everything changed when I found the most understanding teachers at the end of my school. I switched schools and had a teacher recognize I was smart and bored and distracted, and she tested me out of the classes and let me spend my time on other random things that were tangentially related and still work with the other students. Game changer compared to where I was where I’d get deductions for doing problems early or reading ahead.
The point on the way to many interests and things, and loving yourself beyond the meds, very important! I found o was regulating myself too much for the first while after diagnosing, and the most relaxation wasn’t what people might typically find relaxing, it was letting the (healthy enough) chaos flow in a safer environment than I was previously prepared to setup.
I was first diagnosed as a kid (But with ADD), and then again as an adult with ADHD (how I found out that they are now considered the same thing).
For me, it’s never been a case of am I or aren’t I neurodivergent, and I’ve never been medicated. I’m not sure I need medication, or that medication would help. Part of that is because the coping mechanisms I’ve developed (while not full proof) allow me to function for the most part without crashing into the rails too hard. The main problem is that when I do crash it’s not depression I experience but exhaustion.
It takes me a long time to recharge, and I’m not sure how meds could help with that. No doctor has ever convinced me that I need them.
