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.