Advice on explaining lupus & scleroderma to my grandson

[MoominMomma]

The time has come for me to tell my 11 year old grandson about my health issues as we’ve always said that ‘nanna’s body doesn’t quite work properly!’ He’s such a caring & sensitive person so we didn’t want him to worry as he doesn’t always know how to share his emotions.

Recently he’s been asking me if I’m okay a lot more often. I have mixed connective tissue with both lupus & scleroderma along with pulmonary fibrosis, trigeminal neuralgia, osteoporosis, oesophageal problems…… (I’m sure you get the idea!)

I’m hoping that someone can give me some advice on how to explain this stuff so that a child can understand. I’m extremely grateful for any help!

🥰🤗

[Tiggywoos]

When I was your grandsons age my Nan had kidney disease and heart problems . No one ever said much to me but I used to notice that nanny was often out of breath and sat down a lot . I always remember seeing her take loads of pills with her cup of tea 😊.

We used to watch TV together and did lovely crafty things 😊. I remember watering the plants together but she never left the house as she couldn’t walk far . No one ever really explained what was wrong with her and to be honest I’m not sure it would have made any difference to me as she was just “nanny “ . But the fact that your grandson is asking perhaps means he’s worrying about you and noticing more ?

I’m sure you don’t want I worry him with too much detail… I bet he has picked up on way more than you realise as he’s sensitive . It’s a tricky one for sure ….many adults don’t understand what’s wrong with us do they let alone kids ! I wish I could help more but I’m sure you’ll get some good responses and maybe there are some good books on how to explain chronic illness ? I just wanted to share my nanny story as I bet he loves you loads too ❤️

Take care xxx

[Chris21]

hi moonminMomma, I’ve alway been honest with my grandchildren, when they ask a question. The 6yr olds know nanny’s got some funny thing not making her body working properly. The other 3, age 11, 14. & 21 all know that nans good blood sometimes get attacked by the bad and that’s what causes me to sometimes be in pain, breathless and tired. It can lead on to other questions and I just answer until they are satisfied. The 2 older ones know lupus, sogrens, diabetes, coeliac hyper mobility and fibrosis inside out, as all these auto immune disease runs amongst the family. They also understand they may potentially get some of these as it’s in the genes.

It does help as they get older that a lot gets learnt in biology and science. My mother in law had osteoporosis and the children accepted that her bones weren’t the same as ours and she could break a bone if she wasn’t careful.

Do you remember how you explained where babies came from? It’s very similar 😂 As much as they need to know. I think your grandson will surprise you. X

[MoominMomma in reply to Chris21]

Many thanks for your reply, it’s very helpful. Yes I do remember the where do babies come from question!!! 🤣 xx

[Betty909090]

👏👏👆❤️Keep it going!

I’ve a 3 year old grandson who can name me all the dinosaurs.👆👏

🦖. No problem with SYSTEMIC LUPUS ERYTHEMATOSUS!🤣👆He even pronounces it correctly!🤣

Loves learning. These little people know a lot more than adults credit them for. He’s probably highly intelligent and picks up things like a sponge. In an age of Google , wiki and the internet it’s best to be completely honest with such intelligent kids. They know and want to know more.👏👆

[SunflowerYiayia]

I think less is more,maybe until he is older. I believe what your telling him is spot on. It is very hard to tell children the brass tact's situation, and tell them not to worry. As time goes you maybe can tell him bites & pieces.......it is never easy.