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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

I am wondering if it's always worth getting a diagnosis/label

114 replies

LumieresForMe · 25/06/2014 12:47

2 things really made me think.
I very likely have ME, have had for years and regularly struggle with it. But I have never needed a diagnosis on the ground that apart from, learn to manage your energy, there isn't a lot a GP can do.
Dc2 has just had an assessment for AS and after two years of hoping for a diagnosis, he came out 'absolutely fine' even though he still has meltdowns etc etc.
in my case, I've never thought a diagnosis or label would help me in anyway. I'm self employed, my work is scheduled around my own abilities. DH knows I can't do as much as I would like.
In dc2 case, I would have loved a diagnosis as an acknowledgement that dc2 does indeed struggle even though it probably doesn't appear that way from the outside/at school. And the label would have been a way in to explain to him how his thinking is different.
Not having this long awaited diagnosis made think though. Does he really need a label? Do I? What are the benefits of having a diagnosis when you know you aren't going to get any help (which the case both for myself and for dc2)? What could be the benefits of NOT getting a diagnosis?
Just trying to get on head right there, wondering if it's worth fighting for another diagnosis, with all the issues/efforts it involves or if things would be better left alone.

OP posts:
TiredCassandrasbed · 25/06/2014 12:53

I thought it was going to be worth it, for treatment and understanding. I fought so hard for us to get diagnosed and now there are not enough HCP's who bother to read the notes or understand the conditions. It feels like a waste of time and money.

I don't mind the label in some ways as there will be no "its all in the head" stuff going on again.

I do mind the label as you can't get insurance.

It is like a walking sticks I used it on public transport to not get knocked and not have to struggle so much as it makes the disability clear to others. I do like having an invisible condition in other ways, as you are treated the same as others then. Example with sticks someone asked my child directions and would not look at me, that does not happen without sticks.

PixieofCatan · 25/06/2014 12:58

I wonder this as well. If it will help now or in the future, it is worth it imo. I am certain that I have fibromyalgia or CFS, I identify as a fibro sufferer, however I'm only just managing to find doctors willing to refer me to the fibro/CFS clinic at 25 when I've had various problems form the age of 10/11.

It is such a nightmare trying to get a diagnosis. Blood tests. Then doctors appointment. Then more tests, then more appointments, I'm due to have my fourth set of tests now (ones that my doctor originally said that she didn't want me to have). This is before I've even been referred to the clinic. It's a nightmare.

I can't help but wonder why I'm bothering with going formal, but I know that it may help with our finances in the future if I get worse and can't work as much, so I should get the diagnosis sooner rather than later.

TiredCassandrasbed · 25/06/2014 13:00

It cost me a fortune to travel to all the appointments and for the children to pay for private Dr's to advise the NHS Dr's.

I could cry that after wasting all that energy and time and it doesn't seem to have been worth it as we still get HCP's who have no clue what they are doing and we are probably in the same situation as you are with no diagnosis.

manicinsomniac · 25/06/2014 13:03

I don't know, I think for some people the diagnosis is invaluable (even if only from a validation/self esteem point of view that they aren't 'wrong' or 'crazy' or 'abnormal')

Practically speaking - I think some people find their diagnosis isn't worth the paper it's written on.

seasidesally · 25/06/2014 13:03

i got a diagnosis for Bipolar after 15yers of mental health problems

to me it has been so worth it,knowing what is that matter with me,treatments and new anti-psycotics that actually work,so better moods etc,my ESA claim im sure was so much easier due to diagnosis

the down is that i will ever be cured,but i was never going to be anyway,also people will often blaim things on it when it is not it

so a positive for me

Nomama · 25/06/2014 13:05

I have had ME for decades. But I got sneaky and disguised it with pernicious anaemia. The NHS and my GP have to cope with that - I'd die else Smile

I have been lucky that I have managed my symptoms myself (I don't have it very badly), lots of reading, and the advice for anaemia had some overlap for the CFS/ME/yuppy flu/whatever you want to call it these days.

I am now tapping 50 and managing both conditions well, work full time and am managing to get on really well, with my invisible disability. So please don't think you have to deteriorate as you age. You may find your own level and find your own way to manage.

TheWitchwithNoName · 25/06/2014 13:14

My DS has an appointment with a consultant next week to get his 'label'. It makes me very sad (he is implusive but then what 5 year old isn't?) his teacher seems to think there is a problem that needs dealing with. The reason I've been 'pushed' into this appointment is being told that if he isn't seen he will get a 'naughty' label.

Seems he will be labelled what ever I do Confused

seasidesally · 25/06/2014 13:16

on one hand some people (like me)cover it up and plod along for years without being totally honest for a variety of valid reasons (i was scared that SS would get involved)

on the other hand some go for a diagnosis and when they dont get one can become very annoyed that they dont have one,and wont except what has been said,and will spend years continuing to try and get one and takes over their lives

im not saying every specialist etc gets it right but some people just wont except what has been said (non diagnosis)

TiredCassandrasbed · 25/06/2014 13:17

At least if you are going to be labelled I guess get the right one, we were labelled as only mentally ill, all the head type stuff. We have anxiety and depression due to phsyical health problems all related to being hypermobile. EDS/PoTS/sleep aponea to name a few.

TiredCassandrasbed · 25/06/2014 13:20

Seaside, if they don't diagnose properly you can get the wrong treatment as I got, told by psychologist it was all in my head. They can't have been that good as I found out what was wrong with me physically during treatment.

They were going to give my child the same treatment, that would have been very damaging to my child to be told their real physical symptoms were not real.

PixieofCatan · 25/06/2014 13:23

nomama I have what I'd say is a 'mild' version of fibro, but admittedly I am having to cut back my hours at work because I can't work full time and have a life outside of work, it's one or the other for me :( So I am worried that I may end up needing top ups to my finances one day, which is why I'm after a diagnosis. However I will be doing 3 ten hour days, so financially it's not too bad :)

seasidesally · 25/06/2014 13:38

TiredCassandrasbed agree sometimes it can go wrong i never said it was 100% Smile

i have a relative that thinks their daughter needs a diagnosis,they have had 3 and will not except what 3 different proffs have said

the child is perfectly ok, a little spirited but shes a young girl and a real delight,she's an only child and the mother never really had much experience of children before she had her own,she thinks my 3boys are a little wild Grin

i have spent alot of time with the little girl since she was born,nothing unusual imo of her behaviour,does well at primary,many friends,plenty of invites and the mother has never been called in to the school about her behaviour because she dosent need to

this i admit is probably the extreme i admit,but that little girl should not be put through the process just because her mother wont accept it

LumieresForMe · 25/06/2014 13:43

Yes I think for myself, if I hadn't become self employed then it would have been an issue work wise. I know I can't work full time atm.
For a while, I thought about a diagnosis to be able to show to people (incl DH Hmm) that it wasn't just laziness but now that he finally got the message, it just feels right to just handle it myself. Good point about the future and needed extra help/not being able to work as much.

Dc2 is a different matter. There is for me the risk that I just don't want to see things like they are. And I don't want to drag dc2 to endless appointments for nothing. Not the least because I don't particularly want to him to see himself as different. But an assessment of what is going on, what sort if difficulties he has etc wouldn't go amiss. So far though, I found HCP bit helpful if you aren't coming with a 'I wonder if my child has '. I then got a 'we it's do complicated. We would need to do a lot of tests and we might not do the right ones that really show the problem' ....

OP posts:
Luggagecarousel · 25/06/2014 13:43

I don't like labels in general.

I am a teacher. I can start the year with a filing cabinet full of details of diagnosis I am supposed to read, remember and plan round. it is a load of rubbish. literally a week or two full time reading, obviously it is never done, and what is done cannot be carried within my head, and what i do remember might not be helpful or fit in with the class anyway.

"ADHD" has no meaning to me. Every child called ADHD is completely different. Some are just naughty, some are good, some are attatchment disordered, many are very quirt and sad.

"impulse control is a problem" is a helpful comment, although this is not a diagnosis.

"trouble maintaining concentration" ditto

"dyslexia" has no meaning what so ever. ( speaking as a "dyslexic"!) I have a neurological disability which interferes with visual and tactile perception. Most children I come across labelled dyslexia do not!

"needs extra time to process information" is helpful

" short instructions given one at a time" is helpful - neither of these are a diagnosis

"Autistic" is a helpful diagnosis, as there is a certain core similarity, although "ASD" or "Aspergers" may not be helpful, particularly if they are right on the fringe.

"Attachment disorder" is a helpful warning that someone needs careful monitoring and consideration.

Although some of these details are obviously helpful, many actual diagnosis are not helpful at all, and are more likely to red flag unrealistic parents to me rather than genuine problems.

Overall, pointers are good, masses of paperwork is bad, useless, heavy and time consuming.

And in the end, you very quickly work out what works within your class dynamic through trial and error!

TiredCassandrasbed · 25/06/2014 13:43

Hmm my ex, HCP's and schools said the same as you about me and my children, scientific tests they eventually had said they were wrong and the experts and my gut were right.

LumieresForMe · 25/06/2014 13:49

There is also the issue that not everyone sees things as an issue.
I see a child with poor social skills, who is just starting to communicate with others (as in talking to) but doesn't have friends in that he is never invited to anything apart from whole class stuff. He can't tell you what his 'friends' like doing. He takes things very literally. Has no imagination.
Teachers don't see anything at all.
Other parents have noticed the lack if communication though.
But is it a pathology and does it need a label as such?

OP posts:
Nomama · 25/06/2014 13:50

My favourite comment/label, luggage, is the 'likes instructions in short sentences' one.

Ah yes! As a teacher, trained and all that, I love nothing better than to ramble on for half an hour giving interminable instructions and no questions mind just listen and then just as you think your life has ended I will ask you to do as I have just asked why cos I can and I am so very stupid that I don't realise that this is a totally useless strategy for absolutely anyone let alone a kid with a short attention span and lots of boredom distractions or better things to do with his day but hey feel free to patronise me and teach your granny to suck eggs.

seasidesally · 25/06/2014 13:51

really intresting this thread,will watch with intrest Smile

Luggagecarousel · 25/06/2014 13:52

I get your point Nomama, but there are children for whom ultra short is needed! It is nice to know.

LumieresForMe · 25/06/2014 13:55

luggage you see that's the sort if attitude I got from some teachers. That it's just flags over anxious parents.

Tbh if the child has been diagnosed with As or ASD, the I would be surprised if it's just the parents over reacting.

And I've had that for myself as 'you can't be that tired to go to bed at 8.00pm when you haven't done a thing during the day'. Well actually yes I can.

But when a proper diagnosis isn't even enough to prove that I or my dc is actually really struggling, then what are we suppose to do? Then maybe giving up the diagnosis is the right thing to do :(

OP posts:
Nomama · 25/06/2014 13:57

I just assume, until they prove otherwise:

Short sentences
Repeat
Repeat
Write it on the whiteboard
Write it on the SMARTboard
Point at it a lot
Repeat

And then expect half of them to wonder what it is you wanted Smile

In this year's observation I had a single sided, 4 task worksheet. I got as far as look at Task 2.... then chaos reigned. Observer had a hard time not giggling as they started to argue about which was Task 2.

Well... T A S K 2 in bold may have been a clue!

So now, as I said, I just assume all the little labels apply to all of them!

Luggagecarousel · 25/06/2014 13:58

The thing is lumiers there is little correlation between the most needy and the most labelled.

Many children have severe needs, but the parents don't care, don't want them assessed, or in some cases sadly, are not in this country or even in this world.

When a child does get labelled, it can say more about the mother than the child.

OneInEight · 25/06/2014 13:58

Well it is teachers with attitude like you Luggagecarousal which have meant neither of my sons can cope in mainstream. Strangely, enough I do not want to have to put them through "trial and error" every Autumn whilst their needs have been extensively documented. I would recommend anyone with children they think might have ASD to seek a label as it has certainly helped my ds's get the help that they desperately needed.

Luggagecarousel · 25/06/2014 14:00

What exactly would you do you expect me to change, oneineight,

Luggagecarousel · 25/06/2014 14:01

Incidently, it is no different outside of mainstream.