Disappointed with friends reaction when disclosing my ADHD diagnosis…

[Zebrasandfairytales]

Is it just me?

I’m a 35 year old mum of two, married with a relatively successful job, but after an extremely difficult period mental health wise and an intensive course of CBT, my psychologist undertook the assessment for ADHD and it came out as markedly severe, predominantly inattention, She’s now referred it on via my GP for a formal assessment.

I saw some friends at the weekend and they were asking about it in a way that made me feel very uncomfortable. I’m just really hurt that my two closest friends are questioning why I want to pursue my ADHD diagnosis. I am sensitive but could just feel they had discussed it outside of/prior to our conversation, I knew they both doubted what I was saying and their questions and challenges just made me feel so uncomfortable. I genuinely don’t think they meant it to come across in the way it did, and we had had a few glasses of wine, but I felt backed in to a corner and a bit attacked.

When I spoke to them, the first thing they said was what do I think a diagnosis will bring to me? What will it change? It felt like they thought I was overreacting or being unreasonable. Saying that they don’t think it can be hyperactivity or combined type and obviously I couldn’t possibly be considering or needing medication because I’m not hyperactive etc. etc.

Why not? Why wouldn’t I?! It hurts me that the people I love have responded like this (twice now), and it puts me off talking to them about it in future, like it’s implying that It won’t help or it’s a figment of my imagination or wrong or misguided. You would never ask your friend what they think they will gain by going to see the doctor or a specialist about their physical health issue. Because I want to know! If you suspected something was wrong with you physically, you would go to the doctor. Why is this different? Isn’t that enough?

Why do I need to justify it to the only people I’ve spoken to about it so far? I can see why people give up and don’t pursue it. I feel demoralised before I’ve even really begun. I just feel so sad, undermined, disappointed and like this has emphasised that I’m really the only person who gets me at all. I am the only person gets why I would need to do this. I never thought I would have to justify it to someone I love.

it just puts me off disclosing it to my family and others, my two closest friends in the world don’t even believe me and they have seen loads of examples of me struggling in school, college, social situations etc.

have others experienced this? Why do I feel like I need to prove I’m not making this up?!

I was diagnosed at 50 with dyslexia and dyspraxia. Could anyone else, even family I told give a f*ck, no! But to be perfectly honest, it's how it affects you that matters and how all those things you doubted/wondered about yourself, now clicks into place. I think unless anyone else has gone through a late diagnosis, they have no idea how important it is. I'm not excusing them entirely, maybe it's a new concept to them and they don't know how to react. Also, they know and love you for who you are, diagnosis or not, so that's a good thing.

I had exactly the same experience. I am not pursuing a formal diagnosis as I don’t feel it is worth the effort for me. I am 72. It was a big relief to realise that I am autistic. It made sense of so much of my life. I was quite hurt by the complete refusal to even discuss it by my closest friends. I have not pursued it with them but I do feel a bit distanced now. I don’t think they realise. They have explained I am wrong and that is that! I feel free to live my life as I please now. I feel I should congratulate myself on the success of my lifelong act passing as ‘normal’ or a bit eccentric.

Thank you both.

I wish I had your confidence! Thank you for sharing your experiences. I wish I didn’t care but I do… if you have any tips for how I do that in practice that would be great.

So many things are starting to make sense to me now, I feel like everything makes sense for the first time in my life. In true style though it’s become a lot of what I’m thinking about day to day/a new focus and their view was that I should just try to forget about it so it doesn’t take over my life. But it is my life? It’s me? I couldn’t explain to them in the moment why I will not be able to do that… even now I’m struggling to articulate myself.

just feel like I never explain anything very well, I can never say what I’m thinking and I think I mask very well. So it must just look and sound like I’m making it up… so frustrating.

One of my oldest friends is a psychiatrist now, and knows ADHD and ASD well, and yet their reaction wasn't much different than your friends'. I think those who know us well before our diagnosis have just normalised everything we struggle with and considered it part of our personality, so making the leap is difficult. I don't think friend realised how dysfunctional I am as a direct result of ADHD/ASD, even though they've paid witness to my life becoming increasingly shambolic as the years go by - I think their interpretation of that was just that I've just always been a bit "quirky", and they assumed I had more control and choice in what was happening in my life than the reality. There's probably a disconnect when trying to reinterpret decades worth of behaviour that they've always assumed to just be a product of our personalities, rather than a neurodevelopmental disorder that is actually a disability we've been secretly living with (and battling against) the whole time.

@notyourmam that is a really good explanation and helps alot, thank you.

Yes, I’ve always been the ‘crazy one’ or probably a bit weird at times too. And because they don’t see me all the time, or see the full scale of how it affects me, just snapshots of what I choose to present, they’re maybe making assumptions based on that presentation.

One of them is a teacher and works a lot with children with additional needs, I was really surprised by her lack of knowledge but maybe it’s not uncommon by the sounds of it.

I think notyourmam is right. I have been masking and developing coping mechanisms my whole life. No one knows most of what I deal with. Especially as a child. Reaching my own self diagnosis recently had a huge impact on my self understanding so I wanted to share it. Now I realise that was expecting too much of my friends. I have found it so helpful to understand my autism but I realise now that it is best kept to myself just like the rest of my life. So nothing much has changed but I feel a lot better and can manage things better now I know the root cause. And I can seek out support and understanding elsewhere, like this board.

For example, instead of thinking I ‘ought’ to take part in some things I now know that there is no need to if I don’t have to. It is not a failure it is just how I am. I might not be explaining this very well. It is just a weight off my mind and very freeing. I wish I could have had this understanding when I was much younger.

I think those who know us well before our diagnosis have just normalised everything we struggle with and considered it part of our personality, so making the leap is difficult.

This is so true!

I was diagnosed with autism in my early 50's. A friend of 20+ plus stopped talking to me, ghosted me, ignored my texts and emails, shortly after I shared that I'd been diagnosed. I was very hurt as I'm still the same person I've always been. Emphasis on WAS. I'd never allow her back into my life.

I think there’s a MASSIVE amount of disinformation and ignorance about adhd. I remember chuckling to myself when an online quiz suggested I had adhd. I knew nothing beyond the stereotype of the hyperactive school boy.

I was also influenced by the idea that adhd was (in the US at least) a label slapped on kids by an inadequate school system that would rather drug them up than meet their needs.

So if you came to me 18 months ago, I might have reacted like your friends, assumed that you clearly couldn’t actually have adhd and worry that you were going to be taking serious drugs.

I don’t think I know how to articulate the relief and feeling of being deeply recognised within the adhd community. Figuring out who I am has had a massive positive impact on my self esteem and mental health. It’s just wiped away so much shame and self disgust. Those things are, of course, invisible to others but it’s still jarring when people react as if adhd is a negative thing. Or as if it’s a trendy label and I’m just attention seeking. I’m very cautious about who I share this with.

Oh yes, the trendy label thing. I'm guilty of it myself in that I'm kind of sick of everything needing a label, and certainly frustrated with everything being medicalised- IE that someone has anxiety because they're worried about normal life stress such as doing an exam, as surely that would mean everyone has anxiety?! So perhaps there is a bit of that with your friends, along with badly articulated fear that you'll be treated differently if you have this label that so many misunderstand? My ADHD diagnosis has changed my life for the better in so many ways, but I've had very mixed reactions. Including my aunt clearly not wanting me to even mention it- which I've interpreted as her knowing full well that we're two peas in a pod and so doesn't want to entertain the idea that she has something 'wrong' with her too!!

Thank you all - some really helpful things to consider here that, because I’ve been processing it all, have just found it harder to maybe zoom out a bit and consider.

I probably need to give them the benefit of the doubt and a bit of leeway, after all I have had hours of being able to hyperfocus on all this information and really increase my knowledge - and empathise/recognise a lot of it in myself - but frankly a lot of it is internalised for me and my friends don’t see me at work, home etc so maybe don’t get that full picture.

The fact is, and like some of you have said, it shouldn’t matter to anyone else but me and I should focus on those feelings of relief and recognition of finally understanding things for me, not anyone else.

I’ll try to remember to be pragmatic when I next speak to them!

I'm sorry they reacted like that.

I told my friends and they were bemused I didn't already know. We've been friends for 10 years and they knew all along just thought I didn't want to make a big announcement about it.

All of this really, I had a very similar experience. Diagnosis also has massively benefitted my mental health and also my marriage (which was hanging by its last thread and now has much better odds).

So many people don't really know what ADHD is - I didn't either beyond the vaguest suspicion. I told a few friends I was going for assessment. Two were very supportive, one was really startled. Post diagnosis I still haven't told my family and have only told people I trust very deeply or people who need to know for practical reasons. For example, I told my lovely physio so he helped me really hone in on a very stripped back treatment plan I would actually follow, rather than giving me ten different exercises I would never actually do!

Be very careful who you tell. You can't un-tell them iyswim?

I'm glad your psychologist referred you on. I'm still resentful that mine didn't many years ago when I was seeking help for what I thought was PND and I texted her after saying I thought I might have an undiagnosed condition. She never responded. I often wonder how my life might have been different if I hadn't waited nearly another decade for diagnosis. There's a sadness in it. So I'm really glad you're following this up. (And to be fair to psychologist, she may well not have had a clue what adult female ADHD looks like.)

So many people are getting diagnosed now which is great in many ways but I am a bit fearful of a backlash against it because of the 'trendy' label, not helped by jokes about wanting meds to lose weight etc. All these things are a pendulum swinging from extreme to extreme for a while until they settle in the middle.

Thank you @SquirrelSoShiny

Maybe I am naive but I just had this hope that people would accept it…

I’m trying to think about how I will tell my parents but I’m really scared, they have always been so supportive of me during tough times and good. But there’s a part of me that worries I won’t be believed, will have to explain everything, will upset them by being honest about how difficult I have found things at times (even though they know some of it)

I didn’t think it would feel this hard!

There's no rush to tell people, honestly. Really think about what you want out of telling people? I asked my psych should I tell people and did I have to tell work. His default answer was no rather than rushing in iyswim. I suspect he's had patients returning to review appointments feeling very deflated by loved ones going 'Don't be so ridiculous!', especially if it's a mid-life diagnosis with older parents.

It's ridiculous anyway because my entire family has ADHD when I look at the symptoms. So, just as my DC's behaviour seemed totally normal to me, my behaviour seemed normal to my parents - in fact I was the 'good' child because my impulsivity was better controlled and I applied my hyperfocus before exams and my hyperactivity to hobbies or internalised anxiety and overthinking. One of my siblings in particular followed the classic impulsive ADHD sex / drugs / crash out of school / domestic abuse pattern. So I seemed like an angel by comparison but I can tell you I suffered a great deal and put 60% of my energy into masking symptoms. But I got through because even 40% of my energy was more than some people's 90%! 😂

I'm not sure I'll ever tell my family to be honest! I keep them at a bit of a distance anyway for all sorts of reasons.

Stumbled across this thread and it’s incredibly helpful with perspective. Thanks all for sharing your stories.
I’m self diagnosed (procrastinating about filling in my assessment form for the GP referral - know then there’s a 4 year wait for my area) and I’m not sure what I want from a formal diagnosis or who I’ll share it with.

I’ve basically coped for years and hit the wall now I’m in peri-menopause but there have been comments along the way for me too whenever I’ve had more contact with services (midwife / health visitor / DC’s therapist) and in childhood when I moved schools and changed college courses twice.

The GP challenged me that I’ve been ‘quite successful’ and surely I wouldn’t want to take medication… but they haven’t seen the woeful state of my house or how far I am from fulfilling my potential, nor have I had enough contact with any GP for them to realise how I’m crumbling now (or how much rejection sensitivity I had in response to those comments).

@FiniteSagacity i feel this! You are not alone 💐

I have had:

”I don’t understand how a qualified project manager could have ADHD.”
”you don’t need medication.”
”what do you actually want to achieve through diagnosis?”
”I don’t think you should tell anyone about this, just keep it secret.”
”I’m worried you’re labelling yourself.”
Plus lots of facial expressions and patronising/challenging tones.

It’s tough. I don’t have an answer but did find everyone’s responses and experiences helpful. Xxx

I'm still on the waiting list for assessment and have been doing loads of reading about it - it explains so many things I've struggled with which is simultaneously reassuring and depressing!

I'm so sorry that's the reaction you've had. I've told a few friends and I find they're split into two camps: friends who are neurodiverse themselves (diagnosed or not, aware or not) and we can have a good conversation about it, and friends who don't have it and try to be kind but ultimately are quite dismissive as they can't understand at all - to those people I feel like I'm just making excuses and end up wishing I hadn't said anything.

From family, I get kind suggestions of coping strategies which I've tried and failed at many times already, and I think they feel I'm dismissing their support but I'm absolutely not, I just can't seem to make them understand. It's quite lonely though I'm lucky their reaction hasn't been negative.

I've decided I'm going to keep my mouth shut to friends and family until I've actually been diagnosed (and hopefully on some sort of treatment) and have had more time to understand it myself so I can explain it better without it sounding like I'm making excuses for being shit. I'd then happily talk about it more to help normalise it in society.

I've not said anything at work but do wonder if I should to help explain some things I struggle with, I feel like I'm always falling so far short of my potential. I imagine they'd initially be supportive but I don't know myself what support or adjustments would be helpful and I worry that if support didn't work, out of not truly understanding ADHD, they'd see it as unresolvable performance issues and then slowly manage me out. Can anyone share any experiences they've had out of telling their employers, or what adjustments worked for them?

@PorkPieForStarters great question. I work for a large company that broadcast the ‘bring your whole self to work’ and inclusion and diversity is a big deal and on senior management performance objectives. But. Do I want to even have that conversation with my own line manager until I have a diagnosis and an idea of what might be a reasonable adjustment for me? I’m also in a very small team so at a local level I realise it will be challenging for my colleagues.

@Zebrasandfairytales thank you - and thanks again for starting the thread 💐

Thank you @PorkPieForStarters @FiniteSagacity

i had a conversation with my line manager about it as it came up in my review (in a supportive way) that even though they think I’m brilliant and were in no way saying there was anything wrong with my performance (they know I can be sensitive to criticism!), they wanted to understand why a few things had been becoming more evident such as inconsistency with my energy, struggling to focus in the afternoons, starting to struggle to complete/finish tasks etc.

When I explained they said it really helped them to understand me as a person more, that I had many, many strengths and what could they do to support me? I did struggle to answer it with anything other than “fundamentally change the way my brain works” (20% joke) but we decided that it’s important for me to take breaks away from screen, build more walking/excercise in to my day (I’m in a sedentary WFH job), join the disability network at my work so I have ally’s I can speak to about specific things without feeling judged, regular 121s and can add things in as I progress with understanding more - I already have noise cancelling headphones and play music through them constantly to get me in the ‘zone’ but they offered/asked if there is any more equipment etc that will help (although not sure there is unless there’s a robot that can start projects for me, remember everything, not zone out etc!!!)
so actually speaking openly about it at work has been extremely helpful - but I am in a related field of work.

@Zebrasandfairytales I’m so happy to read your update after your review 💐
Proactive and supportive, and interested enough in making it work to make suggestions as well, that sounds really positive!

I think I’m valued as an employee because I can make connections and solve difficult problems. I agree with some of the things I’ve read - that ADHD is kind of a superpower (with awful side effects for the hero!).
I’ve talked about struggling with focus and they know I work hard but for me I think this is me overcompensating for a difficult focus day (by working extra hours when I have a deadline to trigger the hyper-focus).
I’m not sure my line manager is ready to talk ADHD and I don’t have the diagnosis behind me. It is only now I’ve hit a peri-menopause wall (oestrogen has a part to play in processing those neuro-receptors), at the same time as having more plates than ever to spin in life, that I’ve made the connection with struggles I’ve had for all my years.
Working at home the majority of the time is such a mixed blessing for me, the office is so full of distractions but I still have to ‘create the conditions’ to make myself focus at home.
Thanks for the reminder to build exercise into my day, always feel better for time out in nature.

I just came across this thread...Programme Manager here and have ADHD.

It's fairly common as we tend to gravitate towards roles that have a lot of variety in them (I can think of anything worse basically than doing the same job, on the same topic every day for years).

”I don’t understand how a qualified project manager could have ADHD.”
Waving over at you. I am a project manager (in construction) and so is my boss and we both have combined ADHD (severe). I'm about to start meds. We are both highly qualified, high functioning (whilst also SO very chaotically ADHD in our ways). Whilst ADHD is a right pain in the neck for both of us - we often need to be on zoom with each other to get the phone calls made using each other as a body double, or to remind each other what we're meant to do be doing or keep each other on task - we are also capable of hyperfocus and good in crisis management and VERY good at pulling it out the bag at the last minute under pressure. So it's not ALL bad.

@wheresmymojo

"I just came across this thread...Programme Manager here and have ADHD.
It's fairly common as we tend to gravitate towards roles that have a lot of variety in them (I can think of anything worse basically than doing the same job, on the same topic every day for years)." - agreed. I was thinking how come I've managed to keep my job for so many years and I realise it is because really I'm in a new job all the time as I am constantly moving onto a new client project which means engaging with a whole new team of architects/contractors etc and so every time it is like starting again I think that's why I enjoy it. Plus I can have periods of not being over loaded and others where there just aren't enough hours in the day. I need some of that high pressure and also the quiet times that help with my total lack of executive funciton or motivation at times.