Has anyone got any tips on explaining to an 11 year old inquisitive girl and a caveman 14 year old boy what their mum has?

I just got my welcome pack. Both had a look. 14 year old main question - is it cancer are you going to die? His grandad died last year following a good fight against liver and prostrate cancer.

Hello Whathappened. I was diagnosed with Lupus in November. I have subacute cutaneous lupus with no sign of organ involvement so far. But I do have nearly all the other lupus symptoms. My children are aged 6,8 and 10. I have told them the truth without giving them the worst case scenario. They knew I was very poorly before I was diagnosed and they knew my allergies had also got very bad. I think it has shaken them. Like you with a death in the family, we had three deaths in the family within 12 months, one from old age but 2 very sudden from cancer. I also had to have a hip operation last year. So my children do worry about me and know I am not well but I try to reassure them that I am going to be OK. Luckily my medication has worked well so far and a lot of my symptoms have cleared up. I even have more energy, which is better for them and me. I hope you get your symptoms under control and wish you and your children well. Good luck.

Hi

Thank you both. I really need to sit and chat with them. Xxx

Hi Whathappened, that is a dilemma for you. I think just straight forward honesty is good....and then ask them if they want to know anything afterwards they can come and ask you. If it were me I would say something like......I have a condition where instead of protecting myself my body is attacking it. This means that sofar my joints and muscles are affected and I now find certain tasks difficult or they take longer. The worse thing though is that I get very fatigued easily so I need to save energy. You can say that your are would also may get more infections and you would have to watch this. You can say that you may have to take meds to ensure lupus does not attack any of your organs but that you will be carefully monitored. I would end on a positive by saying....that lupus is getting better controlled now with meds compared to the past and people can live their lives but with adjustments. This is where you can say that you really do need the extra help at home now and what can they do/offer?

After this conversation.....little snippets of conversation will occur naturally as you get used to new meds and you can explain then. In the beginning I would be honest, and keep it fairly simple and positive.....so it shows that you are going to manage this as that takes any worries from them. You will probably find that you will receive far more empathy than you imagined you would. Even though your son is at the surly caveman stage (all totally normal)....he will reflect on what you have said even if he does not give that appearance to you.

Best of luck xx

Hi,

I was diagnosed last year and was also worried about telling my three children, aged 13,11 and 8 but they already knew I was poorly. I showed them the short video on the lupus uk website, 'what is lupus' which is like a short cartoon clip and very basic. It was a good introduction and provided them with enough information. I made sure they knew that if they had any questions then they could come and ask me or my husband. Unfortunately, over the summer despite the meds improving lots of my symptoms,I lost most of my hair which caused them a lot of worry. Obviously kids associate hair loss with cancer so they were convinced I had cancer. The worst part was other kids and parents gossiping in the playground about me 'having cancer' which my kids found upsetting. Thankfully, we talked a lot to them and reassured them and now 8 months later they are ok. My oldest daughter even said her friends think I'm super cool, like Jessie J!! Who'd have thought having no hair would make me super cool!!!

My advice would be, be open and honest but in very basic terms. Let them know that if they're worried about anything they can come and ask you. We have a 'worry box' so that if they are worried about something but feel awkward asking us then they can write it down, pop it in the worry box and we'll then write them a reply and leave it under their pillow.

Good luck and take care

Xxx

Thank you All,

I will use all the info. They know I'm not right. I don't do anywhere near what I used too. I lie around a lot more and sleep etc. In fact today I have given up fighting and I've had to ring in sick. I'm too fatigued and foggy to work safely. My ribs ache like mad. Saying that though my feet feel great compared to what they where when I was put on methotrexate. I feel so guilty taking time off. But hopefully I'll be able to use it to chat to kids when they get in from school

Thanks again

From foggyndown Whathappened xxxx