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AIBU to feel a bit sad that I just got diagnosed with ADHD with autistic features?

19 replies

Interestedwoman · 12/11/2019 20:33

A private consultant a couple of years ago diagnosed me with ADHD and possible autism, and treated me for ADHD for a while (I didn't get good results from the treatment.) Last week I received a formal diagnosis of ADHD with autistic features on the NHS.

I wasn't sure about medication at first as my experience of it was pretty bad (I have bipolar and it made me hyper, eventually resulting in a hospital admission- this is not unheard of when people with bipolar are put on ADHD meds) but a nurse has now talked me round to trying treatment when I get to the top of the waiting list to commence it.

I felt ok at first, pleased if anything, but now I feel a little sad.

I would like to get your opinions on why I feel a bit sad about it (if I needed to see a therapist about it I would, I'm just asking for the MN opinion- it's early days to decide I need further help with a slight sadness following a diagnosis of a medical condition etc. :) )

Also, AIBU to be sad? What I mean is, please give me your positive stories of living with autism and ADHD to help me feel better about it.

Or say anything else you feel might be helpful. :)

Please be gentle :)

I have other MH problems but that's by the by.

OP posts:

Am I being unreasonable?

39 votes. Final results.

You are being unreasonable
You are NOT being unreasonable
lborgia · 12/11/2019 20:42

I think you need to be reasonable about what you can expect of yourself. Particularly given that you have BP and other MH issues, I can understand why this is a lot to take in. I’m not sure why you feel that the NHS diagnosis is more relevant than the private one, except that someone is taking it seriously if they’re bothering to diagnose and treat you perhaps? It is normal with any kind of major diagnosis to go through a bit of a rollercoaster of emotions. I think, if you can, you should “let” yourself feel it. You will feel sad that you have something else to contend with (I know it’s always been there, but it feels different once you know). You can feel sad because you know that this is definitely a “thing” and you already know that having issues makes life harder. You can feel sad that your life might have been different if you’d known earlier. It’s all reasonable. You can also feel relieved, vindicated, reassured, and positive because people are trying to help you. Take care, and take it one day at a time. You are still you, but now you can understand more, read up, and work with your symptoms rather than pushing against them trying to make yourself behave in a way that doesn’t work for you. HTH Flowers

ShawshanksRedemption · 12/11/2019 20:42

I wonder if now the NHS has diagnosed it, it's mad it feel more "official"?

Remember you are not just defined by your diagnosis. You will have a unique and different way to looking at the world. Smile

Interestedwoman · 12/11/2019 21:26

Thanks for your replies. The private consultant was a bit of a narcissist and thought he knew better than all other doctors, even more senior ones. He was very fond of ADHD/autism diagnosis and it was clearly his personal bee in his bonnet that he was more keen on than anyone else. He also managed my bipolar very badly, as he thought it wasn't real and consultants who were actually there when I was treated for weeks in hospital with bipolar and observed me, when he wasn't there at the time, were all wrong. Having said that I can't value more that he diagnosed me with autistic traits, as it made sense of my life.

Calling it a 'formal diagnosis' is what the NHS did rather than my own turn of phrase. It isn't 100% valid to them until they do an assessment themselves- although they did bear his decision in mind and used his assessment as part of their process.

Also, as it wasn't diagnosed with my current NHS consultant, I had no back up evidence and support if I put it on forms etc (I'm disabled due to my MH etc but without this diagnosis I kind of had no 'proof' for that as there was no real reason given why that was accepted by consultants in general, so I could claim anything on a form but had no evidence/grounds to back it up- I have bipolar but only have an episode every couple of years, so had nothing to use to claim I had difficulties in between.)

My last sentence in the OP was a bit of a typo I wrote and then forgot to delete- please ignore. They did initially say I had borderline traits, but think they now will have mostly supplanted this with their diagnosis of ADHD, which can effect the emotions.

@ShawshankRedemption Yes, it is more official as it means my diagnoses are rubber stamped for my current CMHT and GP etc. Before that it wasn't on any current clinic letters etc, although it was kind of on the system.

'Remember you are not just defined by your diagnosis. You will have a unique and different way to looking at the world'

IDK if having ADHD and autistic traits is a bonus in any way. I suppose that was the sort of thing I was looking to hear from people- ways in which it can be good to have them. The consultant did say these are to an extent positive evolutionary traits- they make you more adventurous etc. IDK if I am more adventurous tho. :)

If I were (tackily!) a high earning computer whizz as a result of autistic traits, then I could see it as a bonus, but instead I've never managed to hold down a job, find it hard to keep friends etc. I do enjoy writing stuff and have self published a few things, but they're pretty fringe and not anything more than a handful of people would want to read.

Sorry if this is long and it sounds like I'm moaning lol.

OP posts:
Interestedwoman · 12/11/2019 21:31

I know I have low self esteem, and have had therapy for it and am starting with the NHS consultant in a couple of months. They want me to have a break from therapy for them to see where I am when not in therapy if you see what I mean, so they can see what they need to work on. I can't keep away from therapy though lol and will probably do something in the meantime for a few weeks.

OP posts:
drspouse · 12/11/2019 21:31

YANBU at all, it's a lot to take in.
My DS has a diagnosis of ADHD which was done privately and no NHS doctor has ever not accepted it which is just as well because he's had inpatient treatment for a clash of meds, now has new meds from the GP, and we've had advice on his behaviour and diet from another NHS paediatrician.

BlankTimes · 12/11/2019 21:51

But the diagnosis has not changed you.

You were you before the diagnosis. You are you after the diagnosis. You are not a changed person or a different person.

You are you, unchanged, but now you have an explanation of some of your character traits that's not negative. You have a medical reason for some of those character traits.
Most adults when diagnosed are delighted to find that at last they are not odd, weird or other labels people have given them throughout their life. They now know they have a diagnosed medical condition and that explains WHY they are different, which is a great comfort because up until then they'd spent their lives wondering why they were different and not knowing, usually involving a lot of introspection but never finding any answers.

Blueshadow · 12/11/2019 22:04

I don’t know - you have a condition which can make it quite hard going in the world. That might feel a bit unlucky perhaps? It all sounds a bit clinical, rather than personal? You are not AIBU to be sad. But it’s good that people are trying to help. You haven’t changed, just acquired a different view. I feel somewhat intrigued by your ‘pretty fringe’ writing! Maybe do some journaling on this?

Lindy2 · 12/11/2019 22:28

It can take a while to find the right ADHD medication for each person.

Just because the drug you tried didn't work it doesn't mean none will.

Your private doctor doesn't actually sound like he knows that much about ADHD and mental health. See if the NHS specialist can recommend something different.

GoldfishGirl · 12/11/2019 22:36

If I said that receiving a diagnosis is like a grieving process, would this help you make sense of the emotions? It isn't a linear process, it will go through relief, anger, sadness etc. but at some point you reach an acceptance.

I sense that you want to reach out and are looking for reassurance that it isn't going to be a quagmire.

What I am finding helpful (I have ADHD) is a combination of medication, joining support groups (e.g. ADHD UK, Accountability for ASD/ADHD on facebook), reading, therapy and trying strategies to simplify stuff.

One of the people online said the 'ADHD is a gift' school of thought is codswallop. ADHD can be debilitating, to say it's a gift is ill-founded and quite dangerous. I'm glad I've discounted the view as I don't want the pressure of wondering what to do with my special gift!

Have a listen / watch of Russell Barkley on You Tube (30 essentials of ADHD), he is well-respected for his research and work I think.

lborgia · 13/11/2019 01:41

Yes Russell Barkley's adult ADHD book is brilliant, he is definitely a guru. I found my diagnosis incredibly helpful, it was 5 years ago. I tried ritalin but that made me very unhappy, I now take DeX which has changed my life. Will not my life, but my approach to it. I honestly cannot work out how I managed the first 40 years...

Start looking at the ADDitude website, they've got a great combination of fluffy stuff and really serious - lots of explaining, lots of personal experiences, I find it makes me feel better quite often. I was initially really excited, and then had a huge slump when I thought of all the crap that could be directly related to my add over the years, wondering how different life would be if I'd known. I'm pretty balanced now.

user1473878824 · 13/11/2019 01:50

I have no experience with this OP, but I can imagine that getting a diagnosis with anything must make it feel quite clinical and boxy and like this is why I’m x, y, z. But as a PP said it doesn’t change you at all. But I don’t think it’s unreasonable to feel sad about it even if it doesn’t really change anything, but that doesn’t mean it’s a sad thing to happen, if that makes sense?

Durgasarrow · 13/11/2019 03:58

Getting any diagnosis can be both a bit of a relief and a source of sadness. I remember people asking me, when I got a serious diagnosis, "Aren't you happy, now that you know it's real?" and feeling so insulted and outraged. I knew it was real, even if I didn't know what the name was. And having any condition named means that now one has to deal with the reality of having it. But it is a sadness that eventually gets swallowed by acceptance, and knowing your diagnosis will help to let you find tools to improve your efficacy in dealing with it.

lborgia · 13/11/2019 08:04

Hey OP, hope you’re beginning a better day today. I found this which is excellent - hope you find it helpful (inspiring might be a step too far if you’re feeling feeling down already).

Interestedwoman · 13/11/2019 10:11

Hi everyone! Thanks for your replies. Felt a lot better just for letting off steam by writing a thread, thanks. I agree with the PP who said they felt good about it at first and then had a 'slump.' Also the person who said the whole 'it's a gift' thing is bollox.

I look forward to looking at the links and sites etc you all mentioned.

@drspouse The adult ADHD service is particularly crap. They did say at first they would 'fast track' me due to my having already been diagnosed, then the nurse I saw went off sick and the system forgot about me for months!

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Reikiclaire · 13/11/2019 10:21

I feel a sad for you too. I am a psychotherapist, and have over the years spoken with many adults who have recieved a diagnosis of like yours late in life. I think most people wonder how different their lives might have been had they been diagnosed as children and recieved appropriate help. I am Dyslexic and on the Autistic spectrum and never knew until my sons started having problems and they were diagnosed, but it was a fight to get those diagnosis. From my own experience my best advice would be learn all you can about your diagnosis, understanding and being kind to yourself is so important.

DerbyshireGirly · 13/11/2019 11:05

Hi OP. I was diagnosed at 21, so not "later in life" as such, but at the time I still went through almost a grieving process for what could have been, struggled with my changed self image, felt anger at professionals who hadn't spotted this as I was growing up and had labelled me etc. Not to mention relief that finally somebody agreed that something was wrong and it wasn't just me not trying hard enough. I think this is natural and I'm sure you will make peace with your feelings, hopefully quickly.

Several years on and I'm fine with it. I was medicated for a couple of years and it was life changing. I'm not treated now and I'm okay with it, I know honestly that this condition will mean I never reach my full potential, I'm never going to have an amazing career because I just can't apply myself like other people even though I have the "book smarts". But I have a good life and it's so much more than I could have dreamed of at one point.

Also for saying it does cause us a load of shit, there are good aspects to it. I think most people with ADHD are creative, probably have a few areas we really excel at like nobody's business, are quick minded and witty, and never people you could accuse of following the herd.

Interestedwoman · 13/11/2019 17:27

I feel ok about it at the moment just for letting off steam by making a thread- thanks everyone. xxx

@DerbyGirly It is technically later life, in that I don't want to bring you down but in terms of social skills most of the help would've been more effective (and more available) as a child. Thankfully, your son will benefit from the help available. All we can do is forgive ourselves when we cock up, and try our best. xxx

OP posts:
DerbyshireGirly · 13/11/2019 20:35

@Interestedwoman it was later than it should have been, but I try to think myself lucky that something was done about it in early adulthood rather than decades in...I dread to think where my life would be now if I was still the same person. Who knows.

Interestedwoman · 15/11/2019 12:58

@DerbyshireGirly Yes, it'll help you understand what's happening, be forgiving of yourself, maybe have some strategies to help you help IDK, or even have an employer make adjustments. Plus perhaps accept you mightn't end up as Richard Branson or something.

Is that the sort of thing you mean?

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