a mums dilemma

kelly1 Member Posts: 8
edited 25. Aug 2011, 18:15 in My child has arthritis

my 17yr old has been diagnosed with arthritis this year. I feel it is important that his school ( subject and form tutor at least) is informed of this in view of the amount of time he has had off with illness, hospital appts ect and so they know about his medication and the fact he is often in pain walking etc. However, he is really adamant that he doesnt want anyone to know and feels this information would 'get out' . I want to respect his views but think the school would be able to keep this all confidential and that they should be kept in the loop. i would appreciate the thoughts of young people and parents on this one. thanks


  • andylambs
    andylambs Member Posts: 71
    edited 30. Nov -1, 00:00
    Oooh, that is tough. You have my sympathy.

    Here's my opinion, I'm sure others will have others: As he's 17 and perfectly capable of making "adult" decisions I think you have to wait for him to say it's OK to tell others. If you say anything without him knowing and against his express wishes then he might find that hard to forgive. I'd just keep trying to talk him around, however unlikely that feels at the moment. I can totally appreciate that you want to say something to help him a bit at school.

    Have the school not enquired about the amount of days off? If he knows that you have to explain that it might create a way to talk about it?

    Good luck,
  • anniesmum
    anniesmum Member Posts: 102
    edited 30. Nov -1, 00:00
    Hi there,
    I have been thinking about your dilemma and it is really tough. At least when they are little as a mum you can take some control over this awful thing on your childs behalf. You must be finding your son's reaction really hard.
    So I have been thinking - maybe your son needs to take control of his illness - could you suggest he has a meeting with his tutor either with you present or even on his own and he updates school. He could give them the Chat 2 teachers info and fill in the tick boxes on page 15. I feel it is really important for the kids to take some control over their arthritis, at any age, and part of that is telling people and learning when they need to take things easier. I hate the thought of him coping all day with no one knowing he has pain and feel school should know.
    Not sure wether that helps any - I have no experience of teenagers, yet.
  • kelly1
    kelly1 Member Posts: 8
    edited 30. Nov -1, 00:00
    thank you both for your thoughts - i think you are right that ultimately he has to make these decisions.
    He is coming to terms with this fairly recent diagnosis but is extremely sensitive about people knowing, even his friends.
    He was misdiagnosed for nearly 2 years while I was nearly going mad wondering how my sports mad, super fit son was getting one 'injury' after another, hips, knees, achilles etc and never getting better. He eventually could barely walk. Anyway, he still tells people he's got an injury if they ask about his limp or even crutches !
    I do respect his need to keep things quiet although i think he's making it harder on himself. Anyway, Its great to be able to share on this forum so thanks.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I think he needs some time to come to terms with it for himself, before he can start explaining it to other people. No-one 'gets' arthritis at first, the sufferer cannot believe it has happened to them and some people around them (sometimes family, usually friends) assume that they will take some meds and it will go away, because that is how they perceive illness: go to the doc, take the tablets, recover. Arthrtitis doesn't obey that principle in any way, shape or form. Give him some time and space, he is of an age to make these decisions for himself, just be there for support and encouragement when needed. It is a difficult time for all of you. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • bailey27
    bailey27 Member Posts: 689
    edited 30. Nov -1, 00:00
    Personally I wouldnt say anything. He is pretty much a grown up alredy and kids in schools these days can be very cruel. Should the informaiton get back to other kids he would never forgive you if he got tormented. I am guessing if he is 17 he only has one more year lef tin sixth form anyway?? I would let him be the one to tell people. He he informs you he has let friends and people in school know then by all means have a word with the teachers. But, in my opinion I wouldnt say anything especially if he has already asked you not to.
  • stephibabe2
    stephibabe2 Member Posts: 60
    edited 30. Nov -1, 00:00
    I am 18 and dignosed with JIA when I was 5 so therefore when I was at school it was my mum who told them about it because of my age. However when I started college it was a different matter, and I found it was the first time I had actually had to tell and explain it to someone. It was really hard.. so I know how your son feels especially as he has been recently diagnosed. I would say it is important for the school to know because of the reasons you said, it should come from your son though. Maybe he might be having trouble excepting the athritis as he doesn't want anyone to know? Maybe suggest he has a look on the forum to see his not the only one. If he is still unsure I would say a quiet word to his tutor and explain that he doesn't want anyone to know at the moment. If you don't the school may start questioning his attendance and/or he can't askfor any help if he needs it.

    Take care both of you, Steph xx
  • Ankyspond
    Ankyspond Member Posts: 626
    edited 30. Nov -1, 00:00

    What a sad dilemma, I teach in a secondary school
    and can't believe that they not asking where je been anyway. There will come a time when they do. I can assure you if you were to speak to school it would be confidential with staff. Although he is old enough to make his own decisions so its a hard one.

    He needs to think about these couple of things:

    Will he be able to explain to teachers who ate asking why he missing from lesson, missing coursework etc?

    Will he be ok if he late to lessons and has to explain why?

    Will he be ok if he is asked to do something he can't?

    These questions could be avoided for him if school know. I really wish you well in your decision and your son with his illness and control of it. Xxx
    AS Sufferer
    Live, love and enjoy life, live each day as though it's your last!
  • Carrie77
    Carrie77 Member Posts: 11
    edited 30. Nov -1, 00:00
    Please tell your son I know exactly how he feels however noooooooo one will know that he has arthritis except the relevant teachers.

    I grew up with JCA since 15 mths old, it always seems more difficult for boys than girls because there is such pressure on boys to be strong and tough etc (my hubby also has arthritis). However it will make his life a lot easier if someone is aware.

    Heck I was a teen too and all I wanted to do was look super cool, moody and probably being a girl sexy hahahahahha oh lord those days feel far past me now I am a mummy and aged 34. My teachers knew but none of my mates knew unless I told them. It really was as simple as that. I then went to Uni and had to tell admin staff and course staff that I had JCA but, BUT I got a lovely laptop for being creaky and a palmtop (at the time this was the must have ipad equal) all of which my mates and I put to total use in sending people socializing messages in lectures!

    Final statement: only staff will know, you choose who to tell in terms of mates, make it easy on yourself and say now because if you get iller, which happens sometimes with JCA, you might regret them not knowing and that is when you start feeling different.
  • weejean
    weejean Member Posts: 346
    edited 30. Nov -1, 00:00
    Hi Kelly

    I am 38 and was diagnosed with OA when I was 13. Like your son I didnt want anyone to know and begged my Mum not to say anything to my school as I was scared that I would be treated differently and also that my friends would find out, she didnt listen to me and told my school anyway and I was really upset and angry at her, because of this I didnt tell my Mum when I was really sore etc as I was scared she would keep telling everyone. I think if my Mum had let me accept things in my own time I would have eventually agreed to her speaking to the school but I think she just panicked. I am the mother of an 18 year old myself now and I totally understand why my Mum did this but back then it just left me feeling angry and alone. Your sons world has been turned upside down (as has yours) and he needs time to adjust and accept whats happening to him. You should respect his wishes (I know its so hard) but try to encourage and support him where his school is concerned. As someone has already said, you need to explain to him that the school will want to know why he is absent quite often. I can see things from his side as I was a teenager with arthritis but I can also see things from your side as I am now a Mum. Its such a difficult situation. I hope everything turns out well for your son and I just think you are being a wonderful Mum to him as you are really concerned about his feelings and you are trying to let him be a grown up even although in your eyes he is still your little boy and you want to protect him xx
    Big Hugs
    Jean xx