how to explain lupus to kids

[Raven_claw]

I’ve been diagnosed for a few years now but always tried to hide how bad things can get from my kids. Now they are getting older 11 and 10 they are starting to realize I’m not alway on top form. My eldest often snaps at me about my fatigue/illness (I know this is likely to be her age) But I think I am doing pretty well considering. I still work almost full time rarely take any sick time. I make sure I can be home when they get back from school. I run the house as my husband works long hours. I take them to their sports club every night and several hours both sat and sun. I always volunteer on weekends to help out. As they are athletes I need to make sure their diet is spot on with lots of home cooked fresh meals, I find it tough and some days are definitely better than others. I do not want them to be affected by any of this but does anyone have any tips on how to explain to the kids how hard some days can to help them understand lupus (I know it’s tough for adults to understand!)?

[DorsetLady]

Have a look at this -The Spoons Theory was written by a Lupus patient -

rarainbow.wordpress.com/201...

[Pinklady31]

I can totally relate to this post. I’m very similar with work, running the house due to husbands long shifts, ensuring the kids are well balanced and rounded. I regularly find myself telling them “sorry kids, mummy is having a tired day”, I don’t really know how to explain the disease but I’ve had to be more vocal of recent with my symptoms as my SLE is now causing knee dislocations due to lax ligaments. I offer my kids (ages 7 and 11) pocket money (between 50p-£5) for helping me with chores, doing running around in the house for me, cleaning the inside of the car, that sort of thing.I’m just try to just be as open as I can of the symptoms to help them under as it is such a silent disease. I also discussed and have shown the “black dog” video and book for my depression. I would love to know if there is a good way to describe it Lupus to the kids! 

[Sher78]

I explained to me children when they were very young (I was diagnosed at 16). Obviously your 2 are older than my 2 were when I had the chat with them but I basically told them that my antibodies (I called them soldiers but they were only 3 and 5 at the time) didn't work correctly and that instead of attacking any viruses etc in my body to keep me healthy, they actually used to attack parts of my body by mistake and that when they did this, it would make me unwell.

[Raven_claw]

thank you all

[LuluM25]

I was diagnosed at age 35ish, now 70, and was candid about my health problems when the subject came up. I like you had a busy full time job, running a home and two children and their lives. I thought I had done a good job of keeping the family informed until my now 40 yr old daughter said recently, “Well, we all thought you’d kick the bucket years ago!” So do talk about it, from time to time, in terms they understand, in a calm manner and positively, with hope for the future. It might be a hard road for you, and all of us, but the majority of us will make old, if a bit more achey and wobbly, bones!

[Hidden]

note my diagnosis is Stills Disease which for me manifests as RA. Diagnosis was at 17 and by the time I had two young sons I was 28 and wore wrist splints which were a visible thing my toddlers could relate to, Mummy has her big plasters on, and helped them understand that I was in pain even when they were so young. Rather touchingly they were sympathetic but not much help round the house 😆