Keeping Silent?

[nomad37]

Today has been an emotional day. My daughter spent the weekend with a friend and on the Sunday they went to an airshow.

Today at school her friend told people that her family thought my daughter extremely rude and that she was moody and slept a lot.

My daughter was distraught as this was not how she felt the weekend went, though she admits she did sleep a lot. I phoned the mother, clearly concerned that my child was rude and secondly to ask why they didn't contact me,. i was also concerned that this was shared with her school friends. It turns out she didn't say thank you enough times. (I have to say I find that a bit hard to hear because no-one has ever described her as rude). Needless to say myself and the mother had a row. i explained, with my daughters permission, that her friend knew what was wrong with my child but clearly she didn't have enough knowledge to understand her need to sleep or that at times she can appear moody and silent...the mother said she didn't care please and thank yous are important.

My daughter managed the weekend fine, (when I say fine she didn't stay in bed). Now I didn't tell the mother that my daughter has fibromyalgia when she went) I thought i should, but my daughter is reluctant to tell people, also she said her friend knew she had a 'medical condition'.

this evening, I sat down with her and discussed the fact that, she does not realise how moody she can appear (sorry if anyone feels offended at this next bit) at times sometimes I think she is rude..it has taken me sometime to realise that this is as a result of extreme fatigue which she is fighting. We discussed sharing her fibromyalgia with her close friends and explaining what this means.. She broke down in tears and said she doesn't want people to know. She was literally begging me not to tell people.

I know when I was diagnosed with asthma some 14 years ago, I refused to believe it. I perceived it as a form of weakness and an inability to deal with stress. I used to hide in the toilets to take my inhaler..in fact I was in and out of the hospital so much I was diagnosed as having chronic asthma. (I refused to take the medication) I was so bad I was entitled to DLA and a mobility car. .I have to say initially I felt ashamed of being unable to breathe. it was only when I accepted I had asthma and that it was not psychosomatic, that i was able to start looking at treatment. (I now only need an inhaler 1 or 2 times a year)

So in many ways I know how she feels about sharing with others. Well, maybe I was wrong not sharing with the mother, but I think my daughter has a right to her confidentiality, I suppose i could have said no to her going,

Question now...do I put my foot down and insist she lets others know?

do I inform parents?

You know she just wants to be like other girls but she feels that because people can't see it there is nothing wrong. The Clinical Psychologist explained that her brain is sending wrong messages about pain. I see her struggling against all odds with pain trying to convince herself it doesnt hurt....because the blasted psychologist told her it doesn't! the same with sleep shes fighting sleep (because the psychologist said she shouldn't sleep so much), and yet she has no strategies in place to cope with what its doing to her mind...she is exhausted and in pain and the psychologist says fight it...

Well its just been one of those stressful days where I want to go and slap someone (Oh I am not violent but I really felt like shutting the mother up...and twisting the balls of the psychologist) .

I suppose seeing my daughter sobbing really makes me feel helpless because I cannot take away her pain...and because not everyone will understand her stresses and fears.

Fibromyalgia/CFS shouldn't have to be a secret.

[Hidden]

Personally I would let your daughter make the decision on who she wants to know . My son has aspergers and moderate learning difficulties and was mortified when he had to share a classroom assistant he refused to speak to her because he didnt want people to know. he comes across as very rude at times because he says what he thinks but I only tell people on a need to know basis .. Obviously his school teachers know and his music teacher knows but no one else does and I wouldn't tell anyone without my sons permission ... Obviously on here we are all pretty anonymous. the only thing I would suggest is getting your GP to get your daughter more help .. Different help.... Just because she has seen one psychologist doesn't mean she cannot see another ... I have seen 3 rheumys and two different people from the same pain clinic one was useless one is superb......

I don't agree that we have to announce our illnesses to everyone we know ... Perhaps this sounds weird coming from a volunteer but I don't make a big deal out of all my illnesses so I respect my sons privacy too unless he is having problems that he wants me to intervene with

VG x

[Ginsing]

I know it is sad when we cannot take away our childrens pain, but here we are learning to cope with Fibro, CFS ,Aspergers etc. So just as we are learning so are our children and I believe in respecting their desires for confidentiality. So her manner may not be quite as her host expected, Perhaps her host should have looked behind the cover to see "why" her self with out having to be told.

Perhaps now she knows she will be embarrassed that wont do any harm. Your daughter did nothing wrong I expect she worked as hard as she was able..

My daughter has cfs and I know how difficult it is to help them!

xgins

[irishlady76]

maybe you should send the parent one of the explanatory leaflets that are available to explain he condition and ask her not to discuss it with others she obviously doesnt understand what your daughter is going through poor girl my friends thought i was rude because i couldnt or didnt want oto go out as i was exhausted and after i sent them a leaflet explaining what it was like to have fibro they understood and apologized xx hope she sorts herself out

[tweety in reply to irishlady76]

Hi IrishLady

Where can we get the leaflets your talking about x

[Hidden in reply to tweety]

Your GP should have them ... That's where I got mine from ...

Vg x