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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To wonder if I actually have ADHD after all?

396 replies

FlipsFlops · 15/05/2023 10:37

I was diagnosed with ADHD last year at a private clinic after getting nowhere with the NHS. I did a fair bit of research and went to a named psychiatrist who specialises in treating ADHD and went in with an open mind not necessarily expecting a diagnosis.

Somewhat to my surprise I was diagnosed very quickly (I'd filled in lots of very lengthy forms before my assessment and off the back of that was told I was a clear cut case), and strongly encouraged to try medication (I haven't yet).

It's taken a bit of courage to tell family and friends - some have been supportive, some a bit sceptical ("but you seem completely normal?" "yeah I've seen all those TikTok videos too").

I still struggle a bit accepting the diagnosis and am prone to beating myself up about it (it's not ADHD, I'm just lazy, don't try hard enough, etc...).

Then I've seen this BBC news report today about the "ADHD private diagnosis scandal" suggesting people are being diagnosed by private clinics who don't actually have ADHD.

ADHD: Private clinics exposed by BBC undercover investigation - BBC News

Have I just been taken in by all the TikTok nonsense (even though I don't use TikTok) and exploited by an industry trying to sell me expensive drugs?

Or do I have a genuine neurological condition that's being called into question by journalists looking to turn everything into a some kind of scandal?

I don't honestly know what to think any more.

Hand holding a bottle of pills

ADHD: Private clinics exposed by BBC undercover investigation

An undercover journalist for Panorama is diagnosed and given drugs without proper checks.

https://www.bbc.co.uk/news/health-65534448

OP posts:
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8
MerlinBirds · 18/05/2023 13:57

NotAnotherBathBomb · 18/05/2023 11:13

Last time I’m responding because you clearly don’t read. My reply was to someone who claimed to know loads of people with ADHD and claimed to know that none of them actually have it and claimed that they all told her they just got a diagnosis for money. My reply was tongue-in-cheek, questioning how they happen to know so many scammers. But it’s clearly gone over your head. Repeatedly.

"Last time I’m responding because you clearly don’t read. My reply was to someone who claimed to know loads of people with ADHD and claimed to know that none of them actually have it and claimed that they all told her they just got a diagnosis for money. My reply was tongue-in-cheek, questioning how they happen to know so many scammers. But it’s clearly gone over your head. Repeatedly"

Nothing has gone over my head and I can read. Which might be a difficulty for you? Since literally no-one on this thread "said they knew loads of people with ADHD and none of them actually have it"

What happened is one poster in response to someone querying if people diagnosed with ADHD had a valid diagnosis said as part of their post:

"what to you really know about the adults who you think are claiming to have ADHD because it’s “trendy”? Do you know them well, do you live with them and see their lives behind closed doors? You don’t really know at all"

You then quoted that paragraph saying NotAnotherBathBomb · 15/05/2023 12:19

"what to you really know about the adults who you think are claiming to have ADHD because it’s “trendy”? Do you know them well, do you live with them and see their lives behind closed doors? You don’t really know at all.

You - Also, why would these people spend so much money on diagnosis and private prescriptions for 'attention'?

It's a lot of hard work"

In quoting your post a poster said "A couple don't bother with the meds. They have used the diagnosis to apply for PIP and were open about it"

That poster didn't claim those people didn't have ADHD, they said they used the diagnosis to apply for PIP.

Then you said "Then they’re just overall liars and scammers who would find any way if they could to get money from the government (and I’m surprised you know so many).

In order to get enough points to be approved for PIP, you have to say on your form and discuss with an assessor that you need help getting dressed and preparing the simplest of meals.

Rethink your friendship circle"

Then when I pointed out that PIP isn't awarded on needing help to get dressed or prepare simple meals and posted you the information about the rise in PIP awards for adult ADHD you claimed to already know it was indeed possible, happening often and you were making a 'tongue in cheek' reply to someone claiming something that hadn't at all been claimed.

So please adjust your attitude and educate yourself about ADHD, the benefits system and research around the social media 'trend' before making accusations and being rude online.

MerlinBirds · 18/05/2023 14:02

IHadADreamBut · 18/05/2023 10:45

It's fair to say that if you know you don't have adhd and try to buy/get a diagnosis anyway, you're already a liar and a scammer, whether you want to claim PIP with it or not.

How do you "know" you do or don't have ADHD when deluged with information on social media about ADHD which can be applicable to virtually everyone but is presented as 'signs of ADHD'.

And then you pay for a short money-spinning assessment with a private psychiatrist who says you do?

Psychiatrists are the ones to ask right?

That's the issue being discussed.

RagingWoke · 18/05/2023 17:42

@MerlinBirds because for those things to be adhd they are present all the time and affect all areas of life.
The ADHD project explains it really well. Basically, yes everyone will experience some things associated with adhd some of the time. Someone with adhd experiences this things all of the time and saying 'we all do that' is bigoted and only shows how narrow minded that person is.

The PPs saying similar should educate themselves and leave off the anecdata bullshit.

You wouldn't tell someone with stage 1 cancer it wasn't real because your uncles friends cousin had stage 4 or their lump is fake because we all get lumps. That's how stupid the argument is.

FlipsFlops · 18/05/2023 18:13

Basically, yes everyone will experience some things associated with adhd some of the time. Someone with adhd experiences this things all of the time

I think one of the confusing things about ADHD though that it isn't quite like that, it can be quite paradoxical. It's not "all the time".

I'm not constantly an unfocused unproductive mess - give me an (imminent!) deadline or something I'm super enthusiastic about and suddenly I can smash it.

So in the same way that people can dismiss ADHD symptoms because everyone's disorganised or distractable some of the time, equally I've spent a lot of time believing I can't have ADHD because occasionally I'm actually fairly brilliant.

I think it's that the level of disregulation of focus is much more intense than it is for the average person.

OP posts:
RagingWoke · 18/05/2023 18:55

FlipsFlops · 18/05/2023 18:13

Basically, yes everyone will experience some things associated with adhd some of the time. Someone with adhd experiences this things all of the time

I think one of the confusing things about ADHD though that it isn't quite like that, it can be quite paradoxical. It's not "all the time".

I'm not constantly an unfocused unproductive mess - give me an (imminent!) deadline or something I'm super enthusiastic about and suddenly I can smash it.

So in the same way that people can dismiss ADHD symptoms because everyone's disorganised or distractable some of the time, equally I've spent a lot of time believing I can't have ADHD because occasionally I'm actually fairly brilliant.

I think it's that the level of disregulation of focus is much more intense than it is for the average person.

Agreed, it's very difficult to describe but in very simple terms the adhd signs are present in most people but for NT they are not severe, occur less and do not impact life like they do with adhd. Some things are contradictory, frustratingly so, but again there is a marked difference between experiencing them as ND and NT.

for me its the absolute absence of executive function... unless there's a crisis then I'm almost superhuman. Or give me a task and I will hyper focus on absolutely anything else, sometimes so relentlessly I will forget to eat or sleep, or I'll shutdown and not be able to move.

The emotional regulation (or lack of) is pretty difficult too, an NT person might loose their temper sometimes, or cry or whatever. But with adhd (for me), I have so little control over emotions it impacts every part of my life. Anger and rage have ruined so many relationships and before I knew about adhd I just thought I was an awful person, I'm not excusing shitty behaviour but since understanding more I have strategies in place to help deal with emotions, impulses and behaviours. It's not foolproof but there is a noticeable change in how it impacts my life.

MerlinBirds · 19/05/2023 05:43

"You wouldn't tell someone with stage 1 cancer it wasn't real because your uncles friends cousin had stage 4 or their lump is fake because we all get lumps. That's how stupid the argument is"

No-ones saying ADHD isn't real.

RagingWoke · 19/05/2023 12:21

MerlinBirds · 19/05/2023 05:43

"You wouldn't tell someone with stage 1 cancer it wasn't real because your uncles friends cousin had stage 4 or their lump is fake because we all get lumps. That's how stupid the argument is"

No-ones saying ADHD isn't real.

There a lot of PPs saying anyone who can be independent doesn't have adhd, is a liar and scammer and faking it for benefits.

My example is that PPs are insinuating because adhd isn't as severe it's not valid. Which is exactly what this thread is full of.

RedToothBrush · 19/05/2023 14:20

MerlinBirds · 19/05/2023 05:43

"You wouldn't tell someone with stage 1 cancer it wasn't real because your uncles friends cousin had stage 4 or their lump is fake because we all get lumps. That's how stupid the argument is"

No-ones saying ADHD isn't real.

Maybe no one is saying its fake.

But plenty of people are saying 'oh everyone is jumping on the bandwagon and its not that bad really and they are trying to milk the system for PIP or whatever'.

The entire PREMISE of the programme was to say, that theres a bunch of bullshitters out there and we need to do something about how ADHD is trendy and thats why the private sector are cashing in. With absoluetely no context or detail on WHO and WHY people are turning private. Or why it might not be bloody social media and why women in particular might be having a penny drop NOW rather than 10 - 15 years ago. (Lets go there: wider awareness in schools leading to kids being diagnosed, which in turn leads to the penny drop with parents and recent changes in understanding how ADHD presents differently in women which weren't recognised / taken seriously just a few years ago).

What the FUCK do you think the effect the programme has had on vulnerable people who ALREADY have self confidence issues, anxiety, facing an uphill struggle in the NHS which is full of dinosaur GPs and rampant sexism as well as the whole budget over patient well being dynamic.

Or are you going to deny there is a problem and that the numerous people on twitter who have said their shared cared plans have been cancelled / blocked by their GPs this week since the programme aired are just straight up liars and charlatans?

https://www.theguardian.com/society/commentisfree/2023/may/18/no-adhd-is-not-a-con-if-thats-the-message-you-got-from-panoramas-expose-you-werent-paying-attention?utm_source=dlvr.it&utm_medium=twitter

Adrian Chiles nails it:
Panorama could hardly have made it clearer that while a handful of private clinics may be guilty of misdiagnosing ADHD, that doesn’t mean that ADHD itself isn’t a serious, debilitating condition. But if you’ve been a sceptic all along, or weren’t watching carefully enough, or you didn’t watch at all and merely half-heard or half-read something about the BBC programme, then you might well be the person who says to me: “Turns out it’s all a con, then.”

To be clear, it isn’t. Many lives are blighted by undiagnosed and untreated ADHD. It will often lead to chronic underachievement at school, in the workplace and relationships, and to generally terrible decision-making in every aspect of life. Self-medication often leads to addiction issues. Those with ADHD are vastly over-represented in the prison population. Suicide rates are appallingly high among men and women with ADHD. And these are overwhelmingly the kind of people who will wait for ever for diagnosis on the NHS and are extremely unlikely to have a grand to spare for a consultation at a private clinic, good or bad. This is an unfolding tragedy about which I’m available to make a Panorama show any time they care to ask.

AND

The worst thing, in terms of the stigma around ADHD, is that we’re in danger of coming full circle. In the beginning it was a disorder with which no adult wanted to be labelled. It was something that particularly naughty schoolkids supposedly had. Then it became better understood. Those who could pay the money got the care they needed and sang hosannas about it. So the stigma slowly dissipated and demand for treatment rose. With drearily depressing inevitability some businesses saw a trough into which to put their snouts and, for a healthy price, hand out dodgy diagnoses. People see this is happening and so conclude that the whole thing is at best a bit of a craze and at worst a con. And before we know it, those with ADHD, or who think they might have it, are subject to a new, virulent variant of the stigma and shame we started out with in the first place.

Imagine being in their position, like a young woman I know in the same business as me. She’s pretty sure it’s ADHD that is making her life so miserable and wants to address it. With no hope of an NHS appointment any time soon, she has scraped together more money than she can sensibly spare to go private. So now she’s stuck between the NHS, which can’t help, and an expensive private consultation she possibly can’t rely on. “I just feel I’m now in this awful dilemma. Going private should be an easy, albeit very expensive, solution, but now people might dispute the diagnosis anyway,” she says.

YOUR COMMENTS ARE WHAT STIGMA LOOKS LIKE.

YOURS

There are others on the thread guilty of it, but yours in particular are deeply fucking unhelpful to put it politely. To put it less politely, massively bloody insensitive, ignorant, at times rude, completely missing the point, dogmatic and pushing a narrative which WILL lead to others being harmed in its own right.

I don't think there's a doubt that there are some people being wrongly diagnosed privately with ADHD. The issue is all about context and the way this programme has handled that subject and taken the issue back years at the same time as there is such a huge backlog within the NHS which is blighting people's lives because they can't get access to APPROPRIATE CARE and NOW they have to go back to justifying themselves even more (something that someone with problems with executive functions is going to struggle with in the first place). That WILL cause mental health harms in their own right.

This subject could have been approached in a MUCH MUCH better way. Instead its not just caused a car crash. Its a multi car pile up.

No, ADHD is not a con. If that’s the message you got from Panorama’s exposé, you weren’t paying attention or watching properly | Adrian Chiles

Until I got a diagnosis, ADHD made my life heart-stoppingly, nerve-shreddingly difficult. Many of those affected still struggle to get the treatment they need

https://www.theguardian.com/society/commentisfree/2023/may/18/no-adhd-is-not-a-con-if-thats-the-message-you-got-from-panoramas-expose-you-werent-paying-attention

Sakigake · 19/05/2023 14:34

@RedToothBrush thank you for continuing to make these points, and for sharing the excellent Chiles piece. The Merlin poster has also been making some very unpleasant posts on the thread in Telly Addicts.

Daftasabroom · 19/05/2023 14:35

@RagingWoke thank you.

There are posts suggesting that ADHD and trauma look very similar.

I'd suggest that it is highly more likely that anyone with ADHD is going to suffer more trauma than the NT population. Whether that's due to incredibly impulsive choices, or oversensitivity to external events, or the massive vulnerability to addiction.

RedToothBrush · 19/05/2023 14:49

Sakigake · 19/05/2023 14:34

@RedToothBrush thank you for continuing to make these points, and for sharing the excellent Chiles piece. The Merlin poster has also been making some very unpleasant posts on the thread in Telly Addicts.

I am WELL aware.

RagingWoke · 19/05/2023 16:40

@RedToothBrush thank you for making the point a lot more eloquently than I can and sharing those quotes.

I am so unbelievably angry about the panorama/BBC reporting. It's obviously biased, lazy reporting that will cause more harm in the short and long term. It's clear from some posters on this thread alone that there is an alarming amount of ignorant, misinformed prejudice.

KingsHeath53 · 19/05/2023 17:53

FlipsFlops · 16/05/2023 22:30

OK dyslexia is the example you want to use then…that’s also a spectrum disorder with different manifestations and mild to severe symptoms. And yes you can mask dyslexia…see “stealth dyslexia”

How about ASD. Are the children I know who are coping in mainstream education not “really” autistic? Are my ASD diagnosed colleagues not genuine because they are holding down a professional job?

The ASD point is different because the diagnostic criteria is different. ADHD part of the diagnostic criteria is literally that the symptoms need to be seriously interrupting ‘normal’ functioning (normal clearly being for the medical professional to determine, hence being fluid). That’s not the case for an ASD which has different more concrete diagnostic criteria which don’t include outcomes in the same way. I don’t think I’m saying anything controversial, just repeating what the case should be for a diagnosis to be given, and observing that many people I have met objectively do not meet this criteria.

I’d also add none of them are claiming benefits or anything bad. They mostly just seem to want to use it to explain things they are disappointed with in their lives.

It sounds from your comments like you really want for your diagnosis to be the right one. I don’t know you to know if it is or not. If you’re comfortable the diagnosis is the right one for you, then I don’t know why you would be on the internet saying you are worried about whether it is right after all? My observation is a lot of the comments on here, and amongst adults I know who have been diagnosed, is that the things they say they struggle with are things all people struggle with. There is no doubt some people out there are misdiagnosed. I do not think they are bad people, I think they have been duped by the medical establishment and society at large. I also know that ADHD is a very real and debilitating condition because i have a kid who’s life is blighted by it.

Again, i have no idea if this is the case with you. As your opening comment was one of questioning whether you really fit the diagnosis I thought it might be helpful to think about from a fresh perspective?

for my part I wouldn’t wish ADHD on anyone.

FlipsFlops · 19/05/2023 20:39

@KingsHeath53 - the diagnostic criteria for ADHD simply state that “There is clear evidence that the symptoms interfere with, or reduce the quality of, social, school, or work functioning.” No mention of severe impairment.

You don’t need to know me any my own experiences, but you seem to be questioning the whole premise that anyone with ADHD can be capable of functioning in a professional job and there are clearly LOTS of people with an ADHD diagnosis doing just that.

It seems like you feel this somehow undermines or belittles the very real struggles your son has. I can understand that. But I don’t think you’re right.

OP posts:
Zoflorabore · 20/05/2023 08:54

I posted much earlier on in the thread stating that I was diagnosed with ADHD just over a week ago on the NHS after a lengthy process which involved a huge delay due to paperwork going missing amongst other things. I’ve now also been out on the ASD pathway and for me it’s a formality to be honest, I believe I do have ASD too and have 2 dc with ASD and we have a lot of dc diagnosed within the wider family.

Having now watched the Panorama documentary I really feel for those people who have been diagnosed privately who do genuinely have ADHD and would have been diagnosed exactly the same on the NHS. I agree that the process was awful and must have made some people question their diagnosis or that of their child.

Within my immediate family there are people who don’t believe there’s anything “wrong”‘with me ( their words ) or with my children for that matter. It’s hard enough to feel accepted in society without feeling that your own family don’t even trust in the process any that a diagnosis is not just something that is given out for the sake of it.

what has shocked me though after reading this thread is that I honestly saw the idea of a spectrum as a linear line and have nieces and nephews who have ASD who vary from those attending special school who are non verbal to those who have attended mainstream school who will go on to lead what would be classed as a “normal” life. Here’s me thinking I knew it all, this thread has been really insightful.

Zoflorabore · 21/05/2023 21:31

Just to add- I cannot ( yet ) have any ADHD meds to due to me having high BP which was only picked up at my diagnosis meeting and I’m now medicated for that.

can you imagine being prescribed the meds over the internet with no health checks and someone like me with severely high BP just taking it because I was told it would help me? So bloody dangerous.

BodegaSushi · 21/05/2023 21:45

Zoflorabore · 21/05/2023 21:31

Just to add- I cannot ( yet ) have any ADHD meds to due to me having high BP which was only picked up at my diagnosis meeting and I’m now medicated for that.

can you imagine being prescribed the meds over the internet with no health checks and someone like me with severely high BP just taking it because I was told it would help me? So bloody dangerous.

Your story is exactly like mine, except I was diagnosed privately, over a zoom call 🥴

The doctor (psychiatrist) who diagnosed me didn't just send me meds. He told me to submit my vitals, and while he was waiting for that he sent me info on the different types of medication so I could decide what I'd like to try.

Then my results came back and my BP was high, so he said he would be unable to prescribe any medication until I got it under control.

It took 2 months with my GP to test several times then find the right BP medication for me, and it wasn't until I sent my readings to the private doctor of daily readings for 7 days showing lowered BP, plus proof that my doctor said he was happy with my current BP, that he was happy to start prescribing.

He still would only prescribe non stimulants. It wasn't until a further 12 weeks on those, with continued BP monitoring, that he was then happy to switch to a stimulant as I wasn't happy with the non stimulant.

I'm now 5 weeks into that, and I still submit weekly BP readings and get detailed feedback on my progress.

The panorama program is not representative of the private clinic experience as a whole.

Equally, others report that their NHS diagnosis lasted an hour and was with a nurse.

But the program had an aim in mind showcased what they wanted to to prove their point.

Boymamabee22 · 21/05/2023 21:53

I'm in exactly the same boat OP.

I also wonder how many of my symptoms are trauma related.

KingsHeath53 · 24/05/2023 11:08

FlipsFlops · 19/05/2023 20:39

@KingsHeath53 - the diagnostic criteria for ADHD simply state that “There is clear evidence that the symptoms interfere with, or reduce the quality of, social, school, or work functioning.” No mention of severe impairment.

You don’t need to know me any my own experiences, but you seem to be questioning the whole premise that anyone with ADHD can be capable of functioning in a professional job and there are clearly LOTS of people with an ADHD diagnosis doing just that.

It seems like you feel this somehow undermines or belittles the very real struggles your son has. I can understand that. But I don’t think you’re right.

Sorry probably a miscommunication on my part. Of course people can have ADHD and successful careers. I question people who have been diagnosed with ADHD and have zero negative impact in their lives, ie: are otherwise happy, have good jobs, decent relationships etc, but are somehow being told that all this is them ‘masking’ and finding deadlines stressful is a clinical condition.

Absolutely people with ADHD can have successful careers but to warrant a diagnosis they would be presenting challenges in other spheres of their lives. I certainly know people who have adult diagnoses who have not presented challenges in any sphere, or mental ill health, and have received diagnoses and yes, i do think those people bring a bad rep to a diagnosis that in my family is very real and hugely problematic.

I also know people who have successful jobs but challenges have presented in alcohol abuse, or self harm, or depression etc etc.

FlipsFlops · 24/05/2023 14:53

KingsHeath53 · 24/05/2023 11:08

Sorry probably a miscommunication on my part. Of course people can have ADHD and successful careers. I question people who have been diagnosed with ADHD and have zero negative impact in their lives, ie: are otherwise happy, have good jobs, decent relationships etc, but are somehow being told that all this is them ‘masking’ and finding deadlines stressful is a clinical condition.

Absolutely people with ADHD can have successful careers but to warrant a diagnosis they would be presenting challenges in other spheres of their lives. I certainly know people who have adult diagnoses who have not presented challenges in any sphere, or mental ill health, and have received diagnoses and yes, i do think those people bring a bad rep to a diagnosis that in my family is very real and hugely problematic.

I also know people who have successful jobs but challenges have presented in alcohol abuse, or self harm, or depression etc etc.

How well do you really know these people "who have not presented challenges in any sphere"? I've told people about my diagnosis whose reaction has been "but you're fine though?". I AM NOT FINE. I'm really not. Call it ADHD, call it something else, but I am really really not fine. I might look to the casual observer like someone who has got it all sorted out but inside I'm falling to pieces.

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