Jealousy over diagnosis - thinking of staying off social media

[Silverwhining]

I shared a personal experience about a serious health issue and misdiagnoses on a Facebook group from where I used to live. Many people had wondered why I disappeared for 10 years, and the condition was part of the reason I moved away quietly. Most responses were kind, but one long comment accused me of lying and seeking attention. Some people didn’t even think it was actually me, though others verified it by asking questions only I could answer. The comment was entirely driven by jealousy and ultimately led to my post being removed and me being banned from posting.

To be fair, years ago some people pretended to be me online as a joke, but this was very different. Some people who know me say the Internet is savage and they would not say things like that face to face. This has really affected me and I feel it might be better for my mental health to avoid social media completely.

Hi OP, you have posted a story on here and all replies are saying it is an odd thing to do posting where you did and about your diagnosis. That is the truth and it's best to take it on board. The responses you are getting on here are the same thoughts you would have got from the neighbour hood group. They will assume you are attention seeking, however in your case it sounds like you were trying to reach out as you don't have anyone or many people to talk to about it. Sorry that's the case. Maybe try a Facebook group that centres around people with the diagnosis. That would be a better starting point. Hope all goes well.

There's nothing wrong with sharing if that's what feels right to you...I'm not on SM anymore but lots of people shared personal things. I think the mistake was sharing it on a local group rather than your own page.

I've read all your posts on this thread and you are right, you are not in a state of mind where social media is going to be a safe space for you.

Are you aware, for example, that this thread actually reads as a begging letter to get people to guess what your diagnosis was?

I hope you find the right place to work through your issues, but social media isn't it.

Surely you just say you went private to get your diagnosis. If she's desperate give her the name of the doctor, clinic or wherever you got yours.

But I agree with others that really no one is going to be terribly interested that someone they haven't heard from in 10 years got a diagnosis. Were you a problem when you were there and the diagnosis vindicates you or something else that makes it potentially of some interest?

Just forget about it and move on, you don't know these people any more.

based on this update, you really do need to stay off social media. It's a snake pit, full of venom and bile. Nobody will ever wish you well.

connect with real friends not toxic people who don't have your best interests at heart.

@Silverwhining I am inferring this is the case? That 10 years ago you may have said/done/behaved in a way that was at the time misdiagnosed as EuPD/BPD - very common in dysregulated, undiagnosed and unsupported ASD/ADHD females (they did this to my now near 21yo, it as not until her recent ADHD diagnosis on top of the autism one that she has been able to feel and live normally, so would understand if this is the case).

If so, I am guessing that you sort of wanted to set the record straight - a) that you don’t have the thing you were misdiagnosed with and that b), now you have have a [private] diagnosis and support you are feeling better and are much happier. I am guessing you were hoping for reconnection and possibly understanding/forgiveness for past encounters?

In my experience, FB and other SM avenues won’t give you this and, sadly, there is a huge vein of resentment amongst those who have been on the waiting lists for their children (or themselves) for a long time - we waited nearly 5 years before going private for my kids, and I only had my own assessment recently. Being attacked/criticised over it is really common on SM so I’ve learned not to share.

In effect, unless you did/said something really awful 10 years ago, true friends would have stood by you even had you had EuPD (or whatever it is we’re talking about). The fact that they didn’t, simply means they weren’t real friends and now events are so far distant in the past, they can’t offer you the closure you need. So yes, dump SM, but maybe seek some counselling to help you put this in your past with out the SM validation you may have been seeking - and look to new/current friendships instead from a position of better self-knowledge?

The diagnosis is almost certainly autism or ADHD. Very bizarre to be bragging about that. Please don't become one of those people who make their entire identity about being neurodiverse.

this is social media

Op, you need to get off sm and focus on your wellbeing.

Sharing stories either here or in FB doesn't seem to be helpful.

Please see your GP for some mh support .

Mumsnet is social media.

Even anonymously, forums are not safe places for people who are mentally fragile, except for being incredibly helpful and supportive if you have a specific issue you're sorting through. Though even then you're likely to be accused of making things up, told you are in the wrong, and given very bad advice alongside the supportive posts.

Agree. I am absolutely fed up of hearing about how everyone is ND or anyone who exhibits any kind of odd behaviour or selfish behaviour must also be ND.

My oldest is severely autistic. In a daycentre everyday autistic. Now everyone who is also managing to have families, social lives and jobs are also 'autistic'. We need some better distinctions and yes, people need to stop making it their entire personality. ffs.

Also, a private diagnosis for autism is not generally recognised in the NHS as it's paid for and not always accurate.

Nearly everyone has some sort of diagnosis or multiple these days, it is very unhinged you go posting your medical info on social media when no one has asked for it and then sound shocked when people call you out on attention seeking,

Op I would report your own op and ask MN to move it to the appropriate part of this forum either the mental health forum, ND Mumsnetters or health, as you would have much more chance of receiving the understanding and support you were hoping for.

@MNHQ this is the kind of thread that I think really does put people off posting here. I feel some of these posts are not in the spirit.

For anyone doubting the validity of an adult ND dx, a family member who has a severely autistic child (stated by the professional team around them to need a special school) has just got themselves diagnosed. That adult has no friends and has struggled to hold down a job all their lives. No surprise they are autistic as all their dc are. The medical professionals don’t just hand these out to anyone without any proper tests or assessments.

When we see people doing things which are unusual it would be good if tried to consider that they may have a mental health, social or cultural difference which is an explanation.

My autistic dc tells everyone their life story. They are not attention seeking, they just don’t understand any social rules around what to share and what not to share. Until recently they used to lick family members when they got really over excited, so teaching social rules has been something which has been a long term process.

We can explain to OP what others might think, but let’s do so in a measured way.

I say this kindly, but I think you need to stop seeking validation from people online. You’ve posted on FB to put your own experience out to the world and got really upset by a strangers response and now you’re on another online forum discussing the same experience and getting upset AGAIN at strangers reactions.
Maybe it’s time to step away from online platforms and learn to live comfortably in your own skin in the real world.

Why didnt you post on your Fb wall, rather than putting in on a local area group, where you haven't even lived for 10 years? Do people on there even know/remember you? Seems like you wanted an outpouring of sympathy, which you did get to some extent. I don't condone what that woman did but people can get nasty sometimes and it would be best not to acknowledge it.

What is this supposed to mean? Nasty or a joke I'm not getting?

Also, a private diagnosis for autism is not generally recognised in the NHS as it's paid for and not always accurate.

Is this true? That's awful.

I have three boys with autism so unfortunately know quite a bit. Mine were all diagnosed on NHS but I know some people who went private and then found that schools etc wouldn't recognise it. Unfortunately, whether people believe it or not, it is easier to get a diagnosis if you pay for it.

There is some misunderstanding of how private autism dx works on this thread. Local NHS waiting lists for children in our area are 3 years.

I have known families with children who are out of school or at risk of exclusion and of course they get desperate and can’t wait 3 years. We should not be surprised that where people can spend their savings on a private diagnosis they do.

Private diagnoses are mostly accepted provided they have been done to the NICE gold standard eg ADOS etc as this link from the National Autistic Society makes clear:

https://www.autism.org.uk/advice-and-guidance/topics/diagnosis/before-diagnosis/how-to-request-an-autism-assessment

Locally I do not know anyone who has had the NHS refuse to accept a private assessment.

Good private providers take just as much care as the NHS. After all, that’s where they work when they see their NHS patients. They do decline to diagnose where the child does not fit criteria. I know at least 3 dc locally whose parents wondered about ASD but the assessment came back as a no.

No, not true. My family all have private diagnoses - and as a result GP very happy to do shared care for medication and onward referrals for counselling etc.

However, when it comes to the provision of support and adjacent services as a result of those diagnoses, I think that some NHS departments and schools/LA often want additional information that the diagnostic report does not provide - ie, it may not be enough in and of itself, so they may want an additional NHS assessment too. Many have a policy that having a private report/diagnosis will not allow you to jump the queue within the NHS or for SEN assessment (for EHCPs etc) - which is standard in many clinical fields unless there is an urgent/life-limiting implication of not operating/starting treatment (cancerous tumours for eg).

They can’t actually ignore a specialist report simply because it is private - many of the practitioners also work in the NHS as well as running private clinics so to ‘distrust’ a private report and diagnosis implies impropriety on the part of the clinician, which has professional implications.

What medication for autism is the GP supplying? Counselling?

I think the quality of private assessments vary and if someone got a private assessment then they would have to verify the methods used and they are generally not as robust as the NHS multidisciplinary route. When my children were diagnosed they were observed at home, in school, in the psychologist's office and various professionals came together to contribute. I don't know what is involved in a private assessment generally, but for my brother it was a short appointment with a psychologist who just took the money and wrote the report. I t wasn't like my son's assessments at all and I'm sorry, it just doesn't carry the same weight. How could it?

In any case, a diagnosis doesn't make a whole lot of difference anyway. You don't need it for PIP, and you don't need it to access special schools either. It's a nice to have, definitely, which is why I pursued it myself. But it never stopped my children accessing any services or benefits before they got it.

If ASD is accompanied by ADHD there may be medication (there is in our case). There can also be co-morbid conditions such as anxiety and depression [amongst many others] - these need managing differently in an autistic patient as a ND brain responds differently to many medications and needs careful titration over a longer period. There is no medication for ASD itself, obviously, if that was the gotcha you were after.

There are a lot of benefits of dx for both dx and adults.

Understanding themselves better and enabling everyone in the family and community to understand them better including educational staff for dc and health professionals and helps them get their needs met.

ND individuals have higher rates of co-morbid mental health difficulties and one of the reasons is regular negativity they can often hear about themselves eg if constantly being called unpleasant because their behaviour is misunderstood.

It may unlock the right school options eg access to an autism specific school if needed and if they have those in a particular area.

Is MN not social media?