How did you explain your condition to your young children?

Hi everyone,

I'm hoping you can all be of assistance. I've had an email from a lady who was recently diagnosed with lupus, and is having trouble helping her young children understand her condition. One is 3 and one is 7. I was hoping that some of you that might have explained lupus to your children might be able to share tips that worked well for you?

If we receive some really good tips, then we might even be able to use them in a new leaflet.


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6 Replies

  • Hi Paul, with my grandson who is six I just say that I have sore joints sometimes and sometimes am a little weak. He knows what joints are and I show him. We make light of it when I say that I cannot jump on the spot and I pretend to get him to teach me. Now my meds have helped I can do this and he will say I am getting stronger. If he sits next to me I say oh that helps because the heat off your body helps my joints. He also rubs his hands on mine and I say of that's great. Kids pick up things quick he will say...You can't run granny can you. I always say not now but I have my medal to show you from my half marathon, my badminton trophy and my learning to ski certificates. We try to focus on what I can do well like swimming, spending time with him etc. So he just thinks my joints and muscles get a bit sore because I'm older (51) but this explanation suits and not many other questions are asked. There are so many things we can do that the things I can't do seem really insignificant to him and me. I hope this helps a bit.

  • My children are 7 and 4 years. As they have got older they have noticed that on certain days im in pain and sometimes cry out in pain when moving or getting up from a chair etc and my son asks me whats wrong mum? I was just honest with them and told them some days mummy is sick and her bones are achy, tired and sore. Ive shown them my rashes and the creams i apply. My husband also tells the kids mummy needs to rest now shes very tired and if she doesn't go to bed she will get sick. They are also aware of my medication and know i take meds every morning (mummy's vitamins) to keep mummy better. My eldest son even tries to help me up the stairs when I'm sore which he enjoys because he feels he is helping me. On my good days of course i play with them and try to do normal things. They are also good at tidying up after themselves etc lA fellow lupie friend advised me to be honest with them as her own children grew up knowing about her condition and they never expected too much from her physically and as they got older they were a great help to her and now fully understand her capabilities. My lupus is quite severe and i have organ involvement so it has affected my whole life now. I do feel bad though when i cant get out and my kids are stuck at home but i do try to keep everything as normal as possible. Its better the kids are aware from an early age and they will grow up understanding mummy's illness better. Hope this helps.

  • Hi Paul, My son is 9 and I was diagnosed with lupus a year ago although I was sick for a good year before a diagnosis which was really hard trying to explain as I didn't know myself. When I first got diagnosed I told my son that I had something called lupus and that their was nothing to make it go away completely but the Dr's would try different tablets to kick its butt. On bad days which outweigh the good days I tell him my lupus is trying to kick my butt today and soon my tablets will be kicking lupuses butt and that I should feel better soon. I try to keep it as light as possible but it is very hard and I feel nothing but empathy for any other mother going through the same. I hope this is of some help.

  • Hi Paul

    I was diagnosed19 years ago and had a daughter 13.5 years ago. I've always told her from being tiny that there are some things that mummy can't do and days when she feels really ill. Best advice to get children to cope and understand is compromise. If feeling good do something they enjoy (trip out, go to park) but theysoon uunderstand that on ba days that mummy is slower today and can't do much. Besf advice - don't hide it from them.

  • Hi Paul

    I told my daughter when she was 8 she is now 25 that my red cells were cowboys and my white cells were indians when i had a flair up i use to tell her the indians were fighting each other causing me to be unwell. Of course as she grew older I explained more

  • I have tried to be honest with my son who is 8, but to be honest nothing seems to help! I have been in hospital 3 times within the space of a year and it has really affected him. He has become very clingy, and moany, he doesn't want to leave my side, I have to leave him at school crying, he won't go off and do things with family, and of course this is exhausting for me :( He thinks I am going to die, and gets really tearful about it. I don't know what to do about it, its really upsetting x

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