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

[go8smacked]

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 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.

On the other hand, Fabby, I was told not long ago by a professional well placed to know that it is likely that dd has sustained permanent damage through being forced by me to soldier on. Dd is old enough to understand the implications of this. That wasn't a particularly pleasant moment either.

The OPs situation is a very difficult one for any parent to find themselves in.

Of course it is obvious that too much giving in will cause damage. Muscles need to be exercised, depression needs to be warded off, some semblance of normality needs to be maintained.

On the other hand there is a (possibly justified) fear that too much pushing may also cause damage.

So how do you know how much effort is too much? Whose judgment do you trust? You are not inside the body of your child so you can't really know how they're feeling, but you still have to make decisions all the time based on your supposed idea of how they are feeling. And if you get it even slightly wrong it will be remembered and used against you next time. It is hellish to find yourself in a position where you have to make these judgment calls every day of the week.

Surely it is not going to kill us to say to the OP "We understand this is very difficult for you. We hope things get easier and that you get the support you need".

Fabby you are talking out of your arse

The WORST thing you can do with CFS/ME is press on and try to work through the pain/exhaustion. The most important key to recovery is learning to STOP and allow yourself to rest.

You really shouldn't post advice on things you know absolutely nothing about.

YANBU I am a teacher with CFS (going on for nearly 12 years now) and these are the attitudes I have come across through college, university and my work place.

Some of my colleagues still hold the "yuppy flu" frame of mind about my condition despite being so exhausted I have crashed at work needing admittance to hospital on many occasions.

CFS/ME is covered by the DDA which needs to be remembered.

Unfortunately it is one if those conditions that can fluctuate and unless you have experienced it very hard to describe/understand (a bit like someone describing sleep deprivation with a new baby, you don't get what it is actually like until you are there in the middle of it)

cory - I had a similar experience to your daughter at school as a child with juvenile arthritis. Later on communication about how I felt also broke down completely with my parents. I am 31 now and my health has been much better for the last few years (the JA lasted much longer than usual, but I'm lucky that only a few joints have sustained lasting damage). I still have pain but it is much less, much more episodic (a bit more like being prone to regular migraines or something) and I can exercise regularly which I never could growing up. But I am still dealing with major problems with expressing my feelings that have a direct connection with the failure of communication about chronic pain as a child and teenager. I still find it impossible to talk about some of the things that were said or implied to me as a child about 'pretending', even with a therapist! I was so worried about it that I would constantly overcompensate - e.g. stay at school in great pain until after a test so that no-one would think it was put on. Because I didn't talk about it I developed my own ways of dealing with pain which were fairly effective but quite damaging socially and psychologically.

I do think it is a complicated issue though because family friends/teachers/other professionals will take their cue in how to respond to these sorts of 'invisible' conditions from the behaviour of the child/parent themselves. So I think it is really important that the immediate family do everything they can to improve their communication and to understand the dynamic of the illness within the family itself. I know not everyone thinks so, but in my case I do think that the arthritis (which is obviously a well-recognised condition, without any of the controversy surrounding ME) had an emotional component - that the auto-immune problem was triggered or, perhaps, once triggered, sustained by emotional strain and upset. Of course that doesn't mean that the pain and inflammation isn't "real". But there were definitely big problems in my family with communication of feelings at all and I do think that contributed to my health problems and also to the unsupportive reactions at school.

This is a really complicated area and I feel for the OP. But best if possible I think to work with the school. I think it is really important for children growing up with these sorts of conditions to have adults outside the family whom they can speak honestly with about their experience and teachers could be a good source for that.

kalidasa, I am so sorry to hear about your experience; it rings so many bells

thankfully, dd and I are still very close, we have talked openly about what happened and she is getting CAHMS help to deal with some of her own reactions to her condition

it is easier now she is older and can take more responsibility for her own pain management- but she still needs to learn to say no before total collapse sets in

My worry is that the school told my DD to stop lying about being ill.

I dont get this from your OP - all I read was that the HT spoke to her about the importance of not pretending to be ill - this is fine because its true. But you are now saying she was told to stop lying about it - was this what was actually said or is this your interpretation??

Thanks cory. I meant to say above that you always sound really sensible, realistic and emotionally intelligent when you write about your DD's health problems. I think the open talking and the access to some counseling is a huge benefit. (My mother actually couldn't bring herself to say the word "counseling" until about five years ago, and still can't utter the word "therapist"!)

Can I ask if her condition is one that might improve as she gets older? I really hope so.

duckdogers, if a headteacher takes your child to one side and talks about the importance of not pretending to be ill and if the other children are not given the same talk- how dim does the child have to be not to conclude that the head thinks she is pretending and the other children are not?

dd got these talks a lot- she understood perfectly well why they were aimed at her and not the school in general

if your boss calls you into the office and gives you a talk about underperformance and you find none of your workmates are given this talk, would you really not feel he is hinting that you are underperforming? if you knew you were pulling your weight would you not feel you were singled out unfairly?

pretending = lying - where's the difficulty in comprehension?

I never knew Chronic fatigue and chronic fatigue syndrome were different things. Whats the difference? Not meaning to be rude just curious

you sound a bit flakey OP and probably passing it on to your kids

leave her at school, stop unsettling her and get on with your day time activities

What is Chronic Fatigue (Without the "Syndrome")?

If you have simply chronic fatigue, it means that you have exhaustion or lack of energy for 6 months or longer. Chronic fatigue is generally a symptom of something else, such as:

Infection
Immune or autoimmune disorders (such as lupus or rheumatoid arthritis)
Muscle or nerve diseases (such as multiple sclerosis)
Endocrine diseases (such as hypothyroidism)
Depression
Organ disease
Fibromyalgia
Sleep disorders or ongoing lack of sleep
High stress levels
Nutritional deficiency
Some causes of chronic fatigue (such as lack of sleep, nutritional deficiency or short-term infection) have an obvious solution and are somewhat easy to correct. When caused by a chronic illness, chronic fatigue can be treated but not cured.

In some cases, doctors can't figure out the cause of chronic fatigue, but the person doesn't meet the diagnostic criteria for ME/CFS. Those cases are diagnosed as idopathic chronic fatigue. (Idiopathic means without known cause.)

Chronic Fatigue Syndrome

To get a diagnosis of chronic fatigue syndrome, you need more than extreme, persistent fatigue that lasts longer than 6 months. You've also got to have at least four of the following, also for longer than 6 months but starting after the fatigue:

Impaired memory or concentration
Post-exertional malaise (extreme, prolonged exhaustion and sickness following physical or mental activity)
Unrefreshing sleep
Muscle pain
Joint pain without swelling or redness
Headaches of a new type or severity
Sore throat that's frequent or recurring
Tender cervical or axillary lymph nodes
In addition to these diagnostic criteria, ME/CFS has about 50 recognized symptoms, including dizziness and balance problems, allergies and chemical sensitivities, anxiety, stiffness, numbness, and irregular heart beat. While not required for a diagnosis, these other symptoms can help your doctor identify what's going on in your body.

So far, doctors don't have a diagnostic test that can accurately detect ME/CFS. The condition is not curable, and so far no medications are FDA approved as treatments for it. Researchers are, however, getting closer to understanding the causes of ME/CFS and learning more about treatments.

OP many of those posting clearly have no idea of what chronic fatigue means. Unfortunately that is likely to be true of your headteacher too.

For the benefit of the ignorant - there are physical changes that are present in those with CFS/ME but the NHS doesn't yet do the appropriate tests. The problems show up in mitochondrial dysfunction, as mitrochondria are inherited from the mother there may be a genetic component.

If you have CFS you need to be very careful about activity - too little and the muscles waste and your problems become worse, too much and your problems also become worse. My normally mild problems are currently severe thanks in part to over exercise. The OP is quite right to be concerned if her child seemed tired and she knows her child rather better than any teacher.

OP now that people are beginning to identify something physical in ME sufferers there is more prospect of improving it's management. Personally I'm trying a lot of supplements and hoping that will produce a long term improvement. If your paediatrician is willing to test for vitamin deficiences testing for B12, K, D3 would be useful. Both you and your child should have tests for coeliac disease.

nonemus - why Vitamin K? Or do you mean K, as in potassium? Vitamin K's primary use in the body is for manufacturing clotting factors - what relation does it have to CFS?

I sympathise, as I suffer from CFS, too.

However, you have to make a plan and stick to it. It doesnt seem healthy to just 'pop in' to school to check on your DD, or expect that teachers will be constantly asking her how she feels. It is best to find a pattern of attendance that fits your DD and that she can cope with and try to stick to it, with the option that if your DD is genuinely feeling unable to function, she can go and rest somewhere in the school or come home.

Thank you NorfolkNChance.

I think how the HT actually approached your DD is the issue here. If it was a general to the class about not exaggerating symptoms, if it was directly to her do not lie about being ill then that is not on.

Fabby you didn't really send your DS to school with glandular fever?? How horrible of you (speaking as someone who had it age 16 and had to resit a year of school because I was too tired/ill to attend).

You are more than lucky not to have done him more damage

A friend has 2 kids with ME/CFS at differrent schools. (lucky her) Both schools have been useless, basically, as has the health care. Can't offer any help or advice, just let you know you're not alone.

My ds has chronic fatigue syndrome,and has had since he was 7 (if not before)......I have never gone into school to 'check' on him,if hes well enough to get up and go to school either driven or catch the bus with friends then we 'agree' that he can go,the rule is that if he feels unwell he tells a selected teacher who will telephone me and within 10 mins he is at home (my day revolves around always being 10 mins away from school) what he doesnt know and what would mortify him to know is that I if im concerned telephone school and the same teacher will make a quick check and see 'whereabouts he is' should she be worried then he is asked to do a 'job' for her and she monitors him for a while so effectively he's resting....there have been lots of days where hes not well enough for school and so he stays home simple as....other days whereby im not happy with him going to school but he tries it and we follow the above and theres been days he goes to the office and simply says 'im wobbly can you phone my mum' and immediately they do equally if he's had a stressful lesson or morning he may go to a special suite and have a rest to give him a bit of 'charge' for the afternoon.

Its not been easy getting to this level of compromise with school but we have worked together and got to this point at the end of the day as much as im his mum and im 'in control' he is the one with the symptoms and he has to learn to 'manage' his illness.

School were rubbish at first and its been a continual thing of me banging on to them about it,helped by the fact ds is v cranky and moody when he is tired (tired is such a weak word in relation to cfs).

The LEA have agreed that ds2 just attends when he can and whilst educationally he has suffered socially and mentally I believe its limited the inevitable depression that comes with exhaustion.

Nickschick - it sounds like you and the school have worked really well in coming up with a solution. It shows they are understanding and take the condition seriously. It sounds good that there is a single point of contact.

Beryl its taken ages and the school nurse is crap the only thing she knew about CFS was it makes you tired the point of contact is a fab woman I know I said shes a teacher but actually shes the heads P.A. and she takes it v seriously as do the receptionists in school,but whilst ds2 has been there another child who is having cfs symptoms is being helped by this same system so hopefully nobody else will have the initial upset we had.

People think Im OTT bcos Im always 10 mins away from school but thats our 'safety net' ds knows its 10 mins and knows to try and hang on - we have had times that hes collapsed unable to move and in agony if that happened in school hed never ever go back hed be so embarrased.

Fabby I find your post a bit offensive.

I cannot send my ds to school when he is poorly as he simply cannot move.
He certainly didnt get M.E cos I pandered to him,the 'tiredness' he exhibits when ill (not just everyday tired) is an all consuming exhaustion that doesnt sort itself out with a 40 min nap.

It is obviously the going into school to check on the dd that has riled posters- and yes, it sounds odd. But then again, the OP has said (repeatedly) that it was a one-off, she is in limbo at the moment waiting for the formal new diagnosis and the school for some reason seems to encourage an open door policy.

Clearly the way forward is to make the OPs dd responsible for telling teachers when she is feeling unwell but:

a) she is 5 years old

b) she has already been lectured her on the evils of pretending to feel unwell, which may not exactly encourage her to tell a teacher next time

This was one of the greatest problems for my dd: everybody kept telling her "well, you've got to tell a teacher, you've only got yourself to blame if you won't tell the teacher", but dd's experience was that when she did tell a teacher she was not believed. And even when she was believed, the school would make it clear that they thought her condition was a dreadful nuisance (my favourite quote, from the HT, was "yes, we appreciate that corydd is ill but you can't expect us to be happy about it )
This problem keeps following her: she is now at a supportive school which we can work with, but after years of contradictory advice and the reality not matching the promises, she still doesn't feel safe. So her instant response is not to ask for help but to start hyperventilating or cut herself. We are working on it and I am sure we will get there. But it is a long road, and I am sure there have been times when I have sounded totally flakey.

The way forward must be what nickschick says, to work hard to establish a sensible procedure to follow with the school. To some extent, it will depend on the attitude of the school; I have found out afterwards that dd's school is considered particularly unsupportive amongst health professionals- so possibly it wouldn't have made a difference if I had approached everything in a perfect way from day 1. But you won't know until you have really given it your best.

A sensible procedure might be a selected teacher to tell (as for nickschick's dd) or a coloured card to hold up if she doesn't feel able to speak about it, and agreed procedure of first action, second action if that doesn't help etc.

A to-do list (given the information of your later posts, OP) might be:

ring the school to let them know that the paedicatrician's letter is in the post

tell them that you will be in touch again to organise a meeting with the SENCO once they have had the letter