Hello fellow BRAINS! Anyone else heard about this diagnosis grieving process thing?

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depression
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anxiety
#1

Started to suspect around 12 yrs old, that my almost chronic daydreaming, spacing, and overall flakiness, had less to do with my “creative spirit” or " lack of discipline" as adults around me often insisted.

Long story short I procrastinated for 13 years, until finally a year ago at 25 I got diagnosed with ADHD. Medication has helped and initially, I was relieved to finally have an answer. Buuut, last week I went through a panic/ meltdown, got through it with the help of an awesome friend and Youtube. But I started to think about my therapist saying that people often go through something similar to a grieving process after they get diagnosed, anyone else gone through this? :thinking:

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#2

I think it depends a LOT on what your conceptualization of ADHD is before you get diagnosed, and your understanding of the implications might be. And I think talking to a therapist who’s realistic before diagnosis can play a big role in that too. But although I’ve not experienced it myself, I know those who have. It can be a tough hurdle to clear, but once you do, life can get a bit easier.:wink::+1:

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#3

:heart::heart::heart: Yes, absolutely, and it’s so brave of you to mention it. For me, it played out as ~2 years of depression, a few months of bargaining, a year of denial (despite being in therapy for ADHD!!), and now I’m (on antidepressants and) feeling acceptance with a Shiny Veneer of Anger. I never told anyone, because I couldn’t handle thinking of them thinking of me as a lesser person. So again, super brave of you to bring it up.

For me, acceptance is looking something like: It’s a relief to find instructions that work with my operating system. Growth mindset might be overblown, but I’m still heavily relying on it. Also… playing neurotypical made me such an anxious jerk. I was so scared of difference; I hadn’t consciously articulated it, but that internalized stigma was a huge part of why my diagnosis-to-acceptance process was so self-destructive. I had to recognize and painnnnstakingly fix all of those deep beliefs about who’s right, who’s not, who has worth, who doesn’t, and honestly, if I hadn’t fallen on the wrong side of my extremely black-and-white unconscious, I don’t think I would have had the motivation. Now I cry all the time and can’t handle anyone talking about “misbehaving kids”, and it feels much better.

Anger is looking something like: Why was there so much stigma for me to internalize??? Who is protecting THE CHILDREN??? (It’s to the point where I’m like, “I’ll have a kid and teach them not-to-hate-themselves and that’ll show my parents” …no, no, no.)

Ohhhhh we’re a weird species. You are definitely not alone :heart:

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#4

Love the idea that we who struggle with something teach our kids not to struggle with the same things as they grow up (and they likely will. ADHD is very hereditary), helping them be more accepting of diversity and neurodiversity.:wink::blush:

And yeah, I was lucky to be diagnosed with Tourette’s and having a very supporting mother. My father (though not that present, timewise) didn’t want to believe it and always denied that I could be having some ‘silly, stupid crap like mental issues’. He has come around in general, still not sure about Tourette’s, specifically. But since I was diagnosed at 8-9, and my mother was supportive, I suspect it was easier for me to go get diagnosed because there wasn’t as much stigma around it. So not anything bad to internalize from my mom. I feel so bad for those of you who got crap or disbelief from parents, or who aren’t believed… It’s a tough and shitty situation…! But we can be here for one another!:heart::blush: And I’m happy that we have found one another, and a forum to share with one another, so we all feel less alone, hehe. And seeing how much we share and have in common, we ARE normal. Just not in the same society as most people. But we have our own community.:heart::+1:

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#5

I don’t know that I’d say grieving process for me but I do go from"hey I love medicine" to “I don’t need it to be myself!” type of emotions. I think the hardest thing lately has been if I do something “ADHD” I’ll get asked, “oh, did you forget your medicine” or “why haven’t you taken your medicine yet”. This always translates in my head as “why haven’t you taken the medicine that fixes you or makes you behave the way I want”. I’m getting better knowing this isn’t true but sometimes it really feels like that.

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#6

I think i grieved more about my buy one get one free diagnosis. I was horrified to discover that I really was abnormal and had an actual personality disorder. The shame was even worse than the shame I’d felt about my ahhd behaviours (before knowing that’s what they were).

So yeah, on the adhd front the diagnosis took away a lot of shame - but it wasnt overnight and this forum helped a lot. Ome of my deepest sources of shame was the days of my life i had done nothing all day (I once spent a whole day in the bath, doing crosswords or sudokus).

Thanks to this place and my therapist I am learning to accept who I am. Which is kind of funny because the more I accept my ‘failings’ the more productive and happy I get. My guilt and shame used to make me withdraw from the world, now I literally hold my head up high, which is something i had stopped doing about 30-35 years ago.

And i do that knowing that I am officially ‘disordered’ :grin:

We are good people, i am a good person. I am not like everyone else and that’s ok. Neurotypicals can teach me some stuff, but I can teach them some stuff too. We all have something to bring to the table.

Sorry, got very sidetracked and a bit emotional there. But yes, grief, i understand it and I am getting over it. I hope you do too :kissing_closed_eyes:

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#7

Yeah, people can kind of be dicks about that… It’s probably just meant as a funny comment or as a joke, but when we sometimes need the medication, have taken it, but something doesn’t work out anyway, in an ‘ADHD’ way, and you get asked that, it doesn’t exactly help one’s confidence…:disappointed_relieved:

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#8

I mean, to be FAIR, an entire day in a bath, doing sudoku and cross-words (provided you keep topping up the hot water!) sounds like an awesome day to be honest…:joy::grin:

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#9

Wow, that’s a really nice story (give or take a dad.) I think most parents who avoid/deny a diagnosis don’t realize that minimizing a kid’s struggles can make that kid feel unseen in a big way. There is a middle ground between “Nothing’s wrong!” and “You’re wrong, you’re doing this wrong.” It’ll make the kid feel so much better if the parent can get in the habit of saying, “Oh, yeah, XYZ felt so frustrating”/ “I bet it felt pretty scary to realize you forgot your homework”/ “I know you didn’t mean to hurt your brother, I can tell you’re really mad at yourself”, and then work with them to learn skills.

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#10

Oh yes. And my official diagnosis came when I was 48. I was looking back at all the years I was just existing, all the opportunities I may have missed, all the ways I could have improved myself, and I definitely mourned the loss of all those years. Now I usually just see the potential, and on a good day, I feel more like I am your age than I feel like a grandpa (which I am).

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#11

Oh, I have always said that I often feel like I’m 13 in my head. My diagnosis in my late forties made me see that that was actually unsurprising :joy:

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#12

:open_mouth::open_mouth::open_mouth: 16-18… I thought I was all alone in psychologically feeling way younger than I am… I’m not childish or immature like a teenager, necessarily, but mentally I just FEEL like I haven’t AGED (not not evolved/developed) since then…:open_mouth::thinking:

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#13

I think how I mean this for me is that i often feel like I don’t understand what’s going on around me (unwritten rules that other people seem to know all about, that kind of thing), plus the emotional dysregulation that other people seemed fo grow out of, and the way my solution to being late is still to literally run harder, which apparently is not what other grey-haired ladies do :rofl:

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#14

Haha, leaving/getting up earlier is for quitters who aren’t optimistic enough! They OBVIOUSLY don’t have ADHD!:joy::joy::joy:

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#15

I can definitely relate to this. So I started on meds maybe 3 weeks ago. Started with Adderall XR and it was awesome to work in one of my busiest hardest weeks but it gave me terrible insomnia and I was sleeping 4 to 5 hours a day and my body and eyes feeling exhausted but my brain wanting to continue working. After that the clinician gave a new prescription ( Starttera) which was sooo expensive so I decided not to buy and right at that point I had the biggest melt down of my life. I was so angry at needing to take medication in the first place, then angry at why is it so expensive? Then why do I have to get a prescription every 2 weeks?. Long story short I spent the next 3 days at the verge of crying all the time. Currently feeling better but still getting over it.

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#16

Don’t feel bad for taking medication to help things that aren’t working properly. If you broke or twisted your ancle, would you be angry to use a cast and/or crutches to make sure you heal properly and can keep functioning normally?:wink:

But yeah, if you’re not getting assistance it can get damn expensive, which sucks…:cold_sweat: Hope you find a good, affordable option.

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#17

The frequency of the prescriptions in the beginning was a nightmare. Luckily I managed to ask the right questions so I could streamline the process. Now the psychiatrist sends the new prescription directly to the pharmacy, they order the meds and let me know when I can pick them up, and if there are no changes I can even pick them up from a ‘hole in the wall’ with a code. This saves me about 3-6 hours spread over several days, which was a blooming nightmare when it was every two weeks! I now get 3-monthly prescriptions which I pick up 3 instalments, once a month.

I also had really mixed/quite negative feelings about the meds in the beginning. After about 6 months I felt a lot more positive about them. Probably coincided with the psychiatrist telling me it wasn’t necessarily for ever, possibly just to help me change my habits and mindset in the first year or two. I wish I had understood that earlier!

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#18

I was diagnosed right after my 43rd birthday. I soon began to grieve for all that I began to perceive as “lost opportunities” from my past, of which I would have been much better able to take advantage, had I gotten a diagnosis much earlier in my life. So many things in the past are preparation for the future, and I managed to spend nearly all that preparatory time unable to prepare for anything simply because I didn’t know (in the simplest sense) who I was, what I could and could not do, and how to handle the person I am. I didn’t know that I had ADHD, and that other people who were doing things which I thought I wanted to do, were NOT working against ADHD. It was much more effort for me; I thought therefore I should put in even more effort. I would have changed plans much sooner, if I’d known that my models were actually people for whom those skills were much more natural than they were for me.

So, when it was time to prepare (so I thought) for a long-term relationship by seeking out and finding potential partners, my ignorance of my ADHD condition left me unable to GET READY for the long-term relationship that I was assuming I would be having by this stage of my life. Similarly, when it was time to prepare (so, again, I thought, and so most of society expects) for a career by getting educated, by selecting an appropriate field and career, and then by getting trained in that field, my ignorance of my ADHD condition left me unable to GET READY for the career that I need to now be having. It’s not that I was bad at HAVING the relationship or the career; it’s that I was bad at PREPARING for either of them, DURING the time in my life when I was supposed to be dedicating my energies to PREPARATION for them.

So I thought. It did indeed feel like grieving. Gaining the diagnosis, learning about it, was actually a wonderful experience, because it gave me a coat-hook upon which to hang hundreds of problematic past experiences. Bad relationships, bad work situations, mistakes of my own choices, my many failures to “try harder” to get this or that job done, my ability to “futz” days, weeks, DECADES away without quite knowing where the time went? All of that suddenly fit in to “Oh, there’s a diagnosis for that. It’s called ADHD.” This much was great!

But then, the lost time couldn’t be brought back. I was 43 years old and only then informed enough to be ready to start adolescence. Hahahaha … so, I do my best to turn this lemon into lemonade. I try to think, that I am now free to be youthful again, even though I am older than most people who have still have their youth. I have heard many people say, in one way or another, that they don’t really want to re-experience High School or Junior High again, but wouldn’t it be JUST GREAT to be able to go back to that time while also KNOWING WHAT YOU KNOW NOW? Imagine being the only experienced guy in your whole high-school-age class, while all the other dudes were paranoid and freaked out about girls and about the disciplinarian vice principal, while you were actually mentally 35 or 40 and able to understand human motivation SO much better than you did when you were actually in High School? Well, I kind-of have an opportunity to do just exactly that thing. I can go back and start over, in some ways.

I hope this isn’t delusional. It’s the best I can do, for creating lemonade out of the lemon which is my very late-in-life diagnosis. I can’t go back and un-perform all the wrong decisions I made when I thought I was going to live a life the way all the “normal” people live theirs. I chose a field and a career that are utterly impossible for people with my sort of ADHD; I got educated in that area; I tried to date people who needed me to be the stable, reliable, standard, conventional person in the partnership, and I invested in those relationships; and so forth. If only I’d known. But since I can’t get that lost time back, and can’t un-do those past decisions, at least I can try to take advantage of the blank slate that I now have.

I’ve been diagnosed for about 10 years now. I’m in my early 50s. I feel like I’m just ready to start young adulthood. Move out of my parents’ house, get an entry-level job, try to live on my own for the first time, maybe get a little cruddy apartment, start to buy a work wardrobe … har har.

And of course, the best part of this is, that I am not living the life I thought I was “supposed” to live just because it was conformist or conventional. I’ve been given a get-out-of-jail card! By having a diagnosis, and by receiving it only after making all those past (supposed) “mistakes” I listed above, I can now say, “Well, I may have invested a lot of time and effort into all those things that kind of bore me to tears, but hey, I didn’t know I had ADHD when I chose those things. And therefore, I’m ALLOWED to change my mind. I shouldn’t have to stick with decisions that I made when I was under-informed about my condition. In fact, I really SHOULD change my career, my education, my lifestyle, my … identity … if I want.” Other people, perhaps saddled with more neurotypical expectations of themselves, probably keep themselves locked into conventional experiences longer than I will. Because when I said, up at the top, that I felt like I was “supposed” to be preparing for a long-term relationship or “supposed” to be training for a long-term career type job, in fact, those were just SOCIAL EXPECTATIONS. Now that I know I was working handicapped, I’m free to dash those expectations to smithereens.

So, for me, the question of grieving over diagnosis? Yes, there’s lost time; no, I can’t really go back to High School to get it all “right” the second time around. And in fact, nobody else can do that either, whether or not they do or don’t have ADHD and whether or not they find out much later in life. Now I’m free to be the real me.

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#19

Oh man, thank you for sharing. Yeah, “”PREPARING”” with the wrong set of instructions: really relatable!!! Onwards and upwards :muscle::muscle:

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#20

I allowed myself to be ‘the real me’ in lots of ways already, pre-diagnosis, but finding out that the real me was one of a standard mould all along and not a freak was a real gift, in the long run. It took me a while to see that though, and I cried a lot of real tears in the process…

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