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AIBU?

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Original poster

AIBU to be gobsmacked that DD2's Headteacher told her to stop pretending to be ill when she has chronic fatigue.

206 replies

go8smacked · 30/09/2011 21:00

DD2 has been suffering from fatigue for nearly 3 years and is under the care of a paediatrician. School know this and that he will be writing to them to discuss how to manage her fatigue.

Today DD2 was very tired, paediatrician has advised that she needs to go to school but we need to moderate her activity, so I send her to school but go in at 11am to check on her. I can see that she is tired as she is self-soothing (she is always tired to some degree) and when she sees me she pleads to come home. Her teacher (also the headteacher) starts to tell her how she has been fine all morning and to stop making me worry ?!?!?!?!? I'm not happy about leaving her but I don't want to undermine her in front of the now assembled crowd of children. I tell my DD2 that I think she should stay for lunch and that I will phone the school after lunch to see how she is. DD2 is not happy but accepts this.

After lunch it takes 30 minutes before anyone even picks up the phone. The secretary goes to check and comes back to say DD2 has not complained again of being unwell. DD1 & DD2 come home. DD2 say's no-one asked her how she felt but that the headteacher spoke to her about how it was important not to pretend to be ill Shock DD1 says that DD2 was tired at lunch and had to sit on a bench.

I cannot believe that the headteacher has basically accused my DD2 of hypochondria - DD2 was laying it on a bit thick when she saw me but I could see that she was tired.

I have had ME for over 20 years and so I am well acquainted with the symptoms and how people just can't 'see' that you are unwell. However the headteacher knows that DD2 has had extensive tests and regular hospital appointments. I also made a point of updating her medical records to show that she is being assessed for chronic fatigue.

I can't believe that the headteacher has taken DD2 aside and told her to stop lying about being ill. I know I need to speak to the headteacher but at the moment all I want to do is remove all my children from this school.

OP posts:
hobnobsaremyfavourite · 01/10/2011 14:31

I "got on with it" 18 years ago when I had glandular fever and live with the consequences to this day. More ill thought out bollocks from fabby Hmm

nickschick · 01/10/2011 14:35

Cory we found at first ds would say he felt unwell but the teachers would say 'see how you feel in 30 mins' (worse than before obviously) and at primary they even sat him in a cold corridor to try and 'wake him up'Angry it was at that point we H.E him for almost 3 years and faced secondary school with a clear thought as to how we could make CFS 'educationally acceptable'.

cory · 01/10/2011 14:46

sounds grim, nickschick, but seems like you dealt with admirably

we're finding secondary far more clued up anyway

and ime universities are better still- I wouldn't dare to treat a student the way dd was treated when she was 8; I'd expect a disciplinary if not instant dismissal

strange, isn't it?

BerylStreep · 01/10/2011 16:43

I know it's a bit of a hi-jack, but I know too well the judgements of people not believing you are unwell. I have a shoulder condition which at times is worse than others, but when it is bad, the pain is all-pervading and just makes you completely weary and exhausted. On top of that, the pain prevents proper sleep, so add fatigue to it as well.

My boss simply doesn't believe me, thinks he is more qualified than my consultant orthopaedic surgeon and the OH Dr, and is ready to judge at every opportunity. I am very Angry at the moment, as I got sight of notes of his in which he repeatedly makes mention of 'Beryl's supposed "fatigue"'. Angry

nonemus · 01/10/2011 18:03

Thumbwitch I meant vitamin K. It is also an antioxidant with the ability to inhibit cell death due to oxidation in nerve cells.

Kladdkaka · 01/10/2011 18:49

I think diagnosises like this are currently a cover for the medical profession not yet knowing what the actual problem is and that's why lots of people, with little knowledge or experience, doubt them. I think they are labelling a group of symptoms rather than an actual condition.

That does not for one minute mean I think those suffering are faking, or over-dramatising or anything. Quite the opposite. I think that one day the truth will be known and society will look back and think 'holy crap, they had x and we didn't take them seriously. We failed these people.'

I say this from my own experience. I had chronic fatigue all the way through my school years. I had the cry wolf talk from my headteacher too. It morphed into depression in my teenage years and again into fibromyalgia in my 20s, with a bit of depression and chronic fatigue on the side. All properly diagnosed by various consultants at various hospitals over the years. I even had an employer try to attend an appointment with the works doctor which he'd insisted on because obviously I was lying and the doctor would (didn't) confirm this.

I have been lucky though, I have finally discovered the unlying problem in my case. At 41 21 I found out that I was autistic. All of the other symptoms of these conditions stem from that. Nobody is telling me to stop being lazy and snap out of it now. (Ok, some are, but that's a whole nother thread)

Those of you still struggling against the tide of uninformed opinions, keep yer chins up girls, don't let the buggers grind you down.

garlicslutty · 01/10/2011 19:09

Thanks, Kladdkaka :) Am feeling a bit sorry for myself atm, having not been able to spend much of this glorious day giving my garden the extensive surgery it needs!

I suppose it is a fairly honest diagnosis of ignorance, in as much as it means "There's something wrong but we can't find out what." Like other sufferers, I sometimes wonder if there might be a cause, which could have been found - I didn't get a full battery of tests compared to some - but suspect this is mainly because I don't want to have a nebulous, debilitating and untreatable disease!

What did they call it before they came up with ME/CFS? I vaguely remember some aunts who were "frail" but, being young, put it down to old age ... they must have been about 35!

It is real. Nobody would choose to give up so much of what's most enjoyable in life.

How did you find out you were autistic?

Sorry, OP - hijack Blush

MamaMary · 01/10/2011 19:09

OP YANBU. I feel for your poor DD. And I can't believe the deluge of posters telling you to stop being hysterical and you're projecting your sickness onto her. How rude to make uninformed judgements like that - just jumping onto the bandwagon I suppose.

There has been a history of CFS in my family - you're right it is hereditary - so I know where you're coming from.

activate · 01/10/2011 20:01

isn't the point that she managed to make it through the whole day whereas you wanted to take her home

I think ME is a horrible illness

I also see you projecting

and don't think the Head did anything wrong at all - it is important for children not to make their parents feel bad - and it seems to me as your child made it through the day, sitting down at lunch, that was the right one

garlicslutty · 01/10/2011 20:19

The signifier is whether she was fatigued the next day or the day after, activate. One of the better tests for CFS is a two-day exercise test. On the first day, sufferers and the control group show similar levels of blood oxygen depletion (and other results) from the bicycle test. On the second day, however, the CFS group shows much worse levels. They haven't recovered.

One of the first things OT teach you, post-diagnosis, is to avoid the "push-crash cycle". Most of us can manage a normal-seeming day if we absolutely have to, calling on adrenalin reserves as you would to finish a marathon, say. But we will then be completely debilitated for days and weeks afterwards.

It's hard to get your head round. It goes counter to everything we've learned about building up resilience.

captainbarnacle · 01/10/2011 20:28

what activate said :)

cory · 01/10/2011 20:32

what garlic said

dd used to make it through the day and then come home and throw up

and was getting progressively more exhausted

now it may well be that this won't happen to the dd's OP and that she will be fine- in which case the OP will know that keeping her in is the right thing to do

(my dd is now far more active than she was and coping- which proves that her activity levels are right)

but she can't know just by judging one day

nickschick · 01/10/2011 22:43

My ds knows his limits, he knows what he can do before he hits rock bottom he understands the trigger signals before he hits rock bottom still he can allow himself to get to rock bottom and still sometimes rock bottom comes unexpectedly ......he doesnt 'do' P.E a whole lesson of P.e even if its a moderated P,e lesson leaves him weak for the day but then the next day he is overwhelmed and the next day he is at rock bottom so for him its not 'worth it',we live opposite a big football pitch and its v sad to see ds sitting watching them play - sometimes before a game he has a kick around 5 mins exhausts him and the price is too high,I was sad to see this like he was a watcher not a player Sad he Grin solves this by saying he gets to sit with the girls Wink.

I used to to wake Ds every morning and ask how he was- at that point he was quite ill but then he took to connecting me asking him if he was ok to not being ok iyswim.

So we bought him an alarm clock it goes off 10 mins before I wake him -by the time I go in to him he knows how he is,I dont ask how he is I carry on as though today is an ok day - he lets me know if it isnt.

He has to control his feelings and manage himself.

Weekends for Ds are spent mostly resting -if he doesnt he pays for it midweek,its not about controlling his illness its about managing his symptoms.

MrsCrafty · 01/10/2011 23:31

This reply has been deleted

Message deleted by Mumsnet.

cory · 01/10/2011 23:37

MrsCrafty, does this mean that the paed who has diagnosed the OPs dd is also a nutter? Presumably he has some reason to believe she is suffering from chronic fatigue?

MrsCrafty · 01/10/2011 23:39

Cory, no, not at all, he was probably fatigued from the Mother wanting a statement.

garlicslutty · 01/10/2011 23:40

How many others' thoughts are you speaking, MrsC? Grin Telepathic posting - very clever. There certainly is a nutter on this thread ...

MrsCrafty · 01/10/2011 23:41

And Cory, I believe that every parent whose children don't fit into the 'top ten' seem to think that there is something wrong with their children.

I also think that the schools today feed this as they get more money for 'help'.

cory · 01/10/2011 23:42

In my experience it doesn't work quite like that, MrsCrafty.

But I would be very interested in why you feel the need to make fun of this poster who is ill and struggling herself and whose dd has a diagnosis of from a professional paediatrician. What drives somebody to do that?

MrsCrafty · 01/10/2011 23:43

Years ago, there were children who were excellent, bright, not so bright and downright dim.

Today they are all magnificent.

You like, I don't.

piprabbit · 01/10/2011 23:46

Exactly what has this to do with a thread about a poorly 5 year old?

MrsCrafty · 01/10/2011 23:46

Cory I am not making fun of anyone. The op clearly needs help. Yet another example of common sense going out of the window to keep lots of people who are in the business of social work in jobs. Excellent.

cory · 01/10/2011 23:46

MrsCrafty Sat 01-Oct-11 23:41:17
"And Cory, I believe that every parent whose children don't fit into the 'top ten' seem to think that there is something wrong with their children."

Really? But a fair few of the children who get diagnosed with autism or various disabilities are in the top ten. My dd has always been top of her class, doesn't make the pain go away.

And fyi the vast majority of children with disabilities or chronic health problems get no extra money spent on them. Dd has never had any. And she was diagnosed 7 years ago. We've spent enough money on her (wheelchairs come expensive), but no extra money has come from anywhere else.

cory · 01/10/2011 23:47

MrsCrafty Sat 01-Oct-11 23:46:35
"Cory I am not making fun of anyone. The op clearly needs help."

And you propose to help her by calling her a nutter? Hmm

Nibledbyducks · 01/10/2011 23:47

" I believe that every parent whose children don't fit into the 'top ten' seem to think that there is something wrong with their children.

I also think that the schools today feed this as they get more money for 'help'."

MrsCrafty,You are at best wildly misinformed, and at worst ignorant and insulting.

You should get some counselling to help with your dellusions of telepathy and your bad judgement.