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Recently diagnosed with JIA- how to deal with classmates

dinap3dinap3 Posts: 3
edited 28. Sep 2015, 15:30 in My Child Has Arthritis
My extremely active and athletic 10 year old daughter was recently diagnosed with polyarticular JIA. This is her first year she has to deal with this illness in school. The first few days were difficult, writing was very painful. I was able to discuss with her school early on and they have made accommodations for her, which has been great. Her doctor put her on prednisone and that has greatly improved her symptoms, but it is a temporary solution and she has been on methotrexate for a 2-3 months.

Of course, her pain is of concern, but we (as parents) also have concerns about their emotional well being. I've worried about what kids might say or do. She had chosen not to share her diagnosis. Today she called me crying that a boy had told her to get away from him because she was contagious. It's a difficult situation, dealing with a recent chronic illness, the pain, the inability to do things you were able to do, the sadness, but to have to deal with this added worry is so hard. I'm very sad for her and don't know what my next course of action should be. Should i ask the administration to explain to her class what's going on, do i go in and explain (I'm all too aware of this disease because i have RA), do we keep quiet?

We don't know anyone in our situation and any advice or personal experiences would be very helpful.

Comments

  • stickywicketstickywicket Posts: 25,864
    edited 30. Nov -1, 00:00
    Hello dnap3. I'm so sorry to learn of your daughter's diagnosis and it will be even harder for you as you, too, have RA. I am not (thankfully) the parent of a child with arthritis but I was diagnosed myself while still at school and, as a mother and grandmother, I can relate to your worries.

    I was 15 when diagnosed and my friends were extremely supportive – literally, at times as I sometimes leaned on them as walking aids. Back then there was no official support in place and one teacher called me insolent when I explained I couldn't move a heavy table for her owing to my arthritis but she apologised profusely next day after talking to my form teacher.

    I never 'made a thing' of telling people but told them on a sort of need-to-know basis which always worked for me. I understand the wanting to blend in and not be different and I think that works well up to a point. It will make her feel more part of the crowd and less isolated but secrets themselves are isolating so you could probably help by being aware of times when this approach isn't working and helping her to decide how she wants to proceed.

    If the other children don't know of her arthritis I wonder why the boy called her 'contagious'. They must know, or be guessing, something. Sometimes the truth can be less damaging than speculation. Trying to let your daughter deal with this in her own way while trying also to guide her must be extremely difficult.

    It sounds as if the meds aren't working as well as they might though the meth might still kick in more fully. When does she next see the rheumatologist?

    You might find something here that would help.
    http://www.arthritiscare.org.uk/PublicationsandResources/Youngpeopleandfamilies Also, a chat with our lovely Helpline people might. I hope things improve for you all.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • dreamdaisydreamdaisy Posts: 31,543 ✭✭✭
    edited 30. Nov -1, 00:00
    Hello, I feel for your daughter because I was the subject of much teasing (nowadays it would be termed bullying and I think it was) due to two very visible conditions, asthma and eczema. Oh the joy when we learned about leprosy in History - joy for my classmates, misery for me.

    Many on here frequently comment on the total lack of understanding from adult family and friends, the unthinking comments usually along the lines of 'You could do it yesterday so why not today?' 'You're cancelling again?' 'It's only a five mile walk so pull yourself together and get on with it, it'll do you good.' and my favourite 'My Gran had arthritis but she's all better now.' I can see why your daughter doesn't want her classmates to know, children pounce on anything that makes an individual stand out in a different way and they do so with glee and relish. The capacity for understanding is limited in ones so young, that's just a fact of life.

    The people who need to know are the adults around her, all the staff who come into contact with her. There may be general disbelief (along the lines of she's too young to have arthritis) so this is your chance to educate. I'm not sure what a grand announcement would achieve but maybe a short talk to her class would be a sensible way to go. The explanation should be short and clear, but I don't think you should be the one to be involved, it would be better coming from her class teacher as they are neutral.

    I can understand your fears too, this must be a very bad dream come true. I had no idea what my mother went through when I was so very poorly but with hindsight I can see how tough it was for her. I am sorry but at least in this day and age the drugs are there to help. I wish you both well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • dinap3dinap3 Posts: 3
    edited 30. Nov -1, 00:00
    Dreamdaisy, thank you so much for your words of encouragement and sharing your personal experiences. It is great to hear from someone who has gone through this experience because like I mentioned, I don't know any children who have Arthritis, I didn't even think I, at the age of 29, could get Arthritis.

    I'm glad she has great support from her teacher, nurse, counselor, principal, coach....a long list of school staff and faculty. And yes, she has experienced some insensitive comments from family and friends. People don't understand and it's easy for them to say things without knowing what the disease is and how it changes from one day to the next.

    Again, thank you. I feel like I'm alone and it's to speak to others.
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