Dealing with grief and anger of being diagnosed as an adult

[ATieLikeRichardGere]

In my case I’m talking about ADHD but I imagine this can apply equally to other conditions. Since getting diagnosed in my 30s, I am going through periods of dwelling on how many things could have turned out very differently, and especially how many years of depression could have been avoided, if only I had received this diagnosis sooner. There were several opportunities not taken by people who should have known better. I am sure that sexism is a really significant factor in no one noticing the obvious. I have feelings of disbelief that this has happened to me. I also feel relief for the new understanding I have finally been given, but the frustration remains. I don’t know what to do with it! Anyone else go through this?

@Mum233 that sounds very hard. Hope you are doing ok. xx

@lljkk about 6 months.

Ok I admit I am enjoying some ADHD TikTok compilations on YouTube, but still not letting myself sign up for actual TikTok…

I think it’s important to wallow for a while. You have to feel your grief to properly move past it.

I understand your frustration at the inherent sexism. Even now the stereotype of the young boy bouncing off the walls is what most people think of, and it makes it hard even to have a meaningful conversation about the issues.

I think I have it. My DD is diagnosed with it and it just makes sense.
I was good in primary school but struggled with work and had no help so got terrible grades, when I went to high school I was truanting, shagging about running amok my parents were shite with me anyway but it annoys me that no one thought why's she doing this?. I was constantly on the move here there and everywhere and felt so alone but hyper with the world and it's abilities to just sod of when I felt like it and no one couldn't understand why?.
I wish now I had more support and encouragement to stay in school and college but there was nothing. Now I've found my own ways to cope and I do feel quite content but I still have a lot more I'd like to improve on myself now and I honestly believe I have ADHd. Things just make sense now.

I was just diagnosed at the age of 34 and I know exactly what you mean.

I'm actually pretty successful - have a career, a husband, an outwardly nice looking life, but my whole life has been littered with unfulfilled potential and it just makes me so sad to think about.

I'm also annoyed no one picked up on it when I was a child, because I definitely knew boys my age who were diagnosed. I was tested for dyslexia, dyspraxia and dyscalculia as well as having to have about a million hearing tests before just being labelled as scatty and lazy :(. I kept scoring top in intelligence tests at school...and then being wildly inconsistent at classwork and almost failing exams and no one could figure out why.

@thelegohooverer yes I’d like to think it’s getting better but I also think that image is still the predominant one in the popular imagination and maybe even for some health professionals.

@stressbandit I hear you. When it makes sense it just makes sense. Glad your DD has a diagnosis.

How were you diagnosed? The NHS has very long lead times for a referral I understand.
Did you decide to medicate once diagnosed? has it helped?

@allfurcoatnoknickers I’m so frustrated for you. I too know boys my age in my class who were diagnosed, so it wasn’t impossible. I too was tested for other things.

Well done on everything you have achieved in spite of the extra difficulties and I hope with the help of a diagnosis there are now more exciting things on the horizon for you.

@12548ehe9fnfobms privately but the NHS psychologist who I was seeing concurrently seems to have fully accepted it and now I’ve been referred into the NHS service to see the psychiatrist but the waiting list is over a year. I plan to take medication but not able to as yet - I think my GP is generally willing to prescribe it as part of a “shared care” plan but there are some other complications in my case so not been able to get going.

That's a shockingly long wait for treatment.

@ATieLikeRichardGere Thank you! I think you said upthread it was sexism? And it absolutely was - as someone with inattentive type, I only disrupted my own life, not anyone else's. Boys with the hyperactive type got so much help and attention.

TBH, my ADHD probably gave me a more interesting life, but I just wish I hadn't blown so many chances in the process. I sometimes think I could have been an astronaut! Or a brain surgeon! or one of the Forbes 30 under 30!

On another note, I've seen some really unpleasant comments on here and on FB about ADHD and I find them really upsetting.

Of course you are angry. I had a similar experience, not ADHD but a hormonal issue that the specialist believes, due to my medical and personal history started to present itself in my late teens. I was angry for a while over my bad behaviour and the consequences that have shaped my life. Each GP I saw about it just blamed stress. I have accepted now that I can’t change history, and am so grateful that it has been sorted-very easily and I can live a lovely stable happy life, I don’t know if I would have behaved the same or made the same decisions-but possibly I may have done.

I was diagnosed with autism in my mid forties and adhd at 50. Tbh I haven't adjusted to the anger and feelings of injustice at how I've been treated over the years (violence, bullying, theft, abuse) and I've fallen into a bad depression. I've changed antidepressants and am managing better now, but I've had to give up my career because I can't stand being near neurotypical people now, even the 'nice' ones. I feel complete separation from other humans now and I can't even talk to them at all. Luckily, I was able to just about afford to retire and I have a pet sitting job when the pandemic isn't affecting holidays.

I've never talked to anyone. The GP referred me to the mental health people, but I detest people so much I couldn't face going to the appointment. I just take the pills and make it through each week. My adhd isn't medicated because I couldn't afford the meds. It's shit and no one gives a damn.

@12548ehe9fnfobms yes it’s ridiculously long, but not unusual for psychiatric stuff with the NHS sadly.

@allfurcoatnoknickers I have those thoughts too haha. To be fair, I am not upset at having ADHD. Like you, I’m pretty sure it has led me to some interesting places. It’s the not having been diagnosed and been granted that self knowledge and help with the difficult parts, of which there are many, that is the problem. What sort of upsetting comments have you seen? People disbelieving in the condition?

@Crimeismymiddlename so glad things are ok for you know but that’s still so frustrating and anger inducing.

@mybrainhertz I’m so sorry that things are so difficult for you and the treatment you’ve experienced from others makes it so much worse. That sounds extremely shit. But I salute you for keeping going and now defining a life that prioritises your needs and not other people’s.

I've never been formally diagnosed, but I'm pretty sure that I am on the spectrum. Even DW, who has a First in psychology and was initially sceptical, has come to think that too.

I've been very successful by many standards, but there's always a degree of retrospective regret about what I might have achieved had it been recognised and I had had appropriate support. But, and it's a big but, when I was a child autistic people were non-verbal, (apparently) intellectually very deficient and only able to live in institutions. Having ASD/ADD/ADHD and being 'high-functioning' simply wasn't recognised.

I also had a lifetime's worth of digestive issues and only got diagnosed as coeliac at 60. Again, when I was young only severe and classic cases were recognised, but applying current knowledge shows that I was suffering all my life. The same applies to my asthma, which was tentatively recognised in my 40s and only properly diagnosed at 55.

And I strongly suspect I have something else lifelong too but it's more socially problematic even than ASD.

Ultimately, hindsight is a wonderful thing, but just as I didn't choose my parents, or siblings, or schools, or children, or mid-career redundancy I didn't choose the non- and mis-diagnoses, and like anyone my age I've got a long list of decisions that seemed good at the time but less so later on (eg when I left a bad job for one that turned out to be worse, would I have been better with sticking with the bad one, and working hard to get promoted to a better position, or was the really bad job a blessing in disguise as it pushed me to make a bigger change for the better, without which I wouldn't have met DW?). I've come to the view that grieving about the past is the enemy of a happier better life in the future.

@TalbotAMan Thanks for your story. You are right the grieving for the past isn’t a long term recipe for happiness of course. Glad you have found success and ways to cope.

@ATieLikeRichardGere Totally agree - I also don't mind having ADHD and think it's made me a more interesting person in some ways, it's def not all downsides, I just wish I could have been diagnosed at school so I could have had more help and been medicated, or at least had help with coping strategies.

There's a few upsetting things:

1. ADHD is just naughty kids. Or people refusing to believe their child has ADHD because they don't get in trouble at school and aren't disruptive.

2. People getting their kids diagnosed, or diagnosing them themselves, and then just writing them off. I think in some ways it's not meant badly but I just don't like the way some people make their kids sound so irreparably damaged and like they'll never have a normal life? And just the total resignation that that's how they are. I think often it's intended as acceptance, but sometimes just comes across as 'well, my child has ADHD and is fucked".

I went to Oxford and make 75K with severe, untreated ADHD. I'm not a write off.

I was diagnosed as autistic at 40. Not knowing has had totally life changing implications for me. I knew I wanted to be a mum but I put it off because I thought something was wrong with me. I started trying once I knew but I'm now 44 and still trying (although hoping that I'm pregnant this cycle), and having to come to terms with the fact that I might never have biological children.

It would have been helpful to know sooner but it's impossible to say that it would have meant that I didn't have years of anxiety and depression. That's a function of the condition and knowing wouldn't have taken that away. When I was younger there weren't services and support for people like me so perhaps life wouldn't have been as different as all that afterall (except I 100% would have tried to have children earlier).

It's a grieving process to go through to grieve for the life you might have had. Don't underestimate what an emotional rollercoaster it is. The anger and grief is also totally normal and don't fight it. Let it flow. Processing a diagnosis as an adult does take a long time as there's so much to unpick.

@allfurcoatnoknickers that is upsetting! There just seem to be so many misconceptions around ADHD. But I can’t understand anyone who would feel they can write off their child.

@bitheby I keep everything crossed for you that you are pregnant this time. That is a really major impact that a late diagnosis has had on your life.

You make a good point that a diagnosis may not have taken away your anxiety and depression. The same could be true for me.

Thank you for the validation that this is a normal grieving process. Exactly as you say, there is such a lot to unpick.

Currently undergoing the diagnosis process for ADHD. Totally agree it’s v upsetting to think of how many wasted years and opportunities happened. There are so many women in their 40s 50s and beyond who have been wondering all their life what is wrong with them and blaming themselves.

Best of luck with the process @Adirondack

Absolutely. Being a highly genetic condition, I am quite certain that my grandmother has ADHD. She is in her 80s and I suppose she will never know - she wouldn’t understand or believe me if I suggested it and she has Alzheimer’s now. Admittedly in her generation it’s not a surprise that she has no diagnosis, but I still reflect on the magnitude of what this undiagnosed condition has meant in her life. I hope people at any age looking for answers and support can have them.