How much to share DDs diagnosis.

[abigboydidit]

Hi,

So DD was diagnosed with juvenile arthritis (JIA) at 22 months old. We are still only a few months in but my instinct has been to not tell people about her diagnosis as I don't want her to feel or be treated differently.

But.. I am aware that public understanding of JIA is pretty poor & I am keen to do some fundraising work. My job is raising awareness of a different (adult) condition so I know I could make an impact (that sounds naff but I hope you get what I mean). But there is no way I can do that without people asking why the sudden interest and realising DD is the reason. I just don't want her to become the poster baby for JIA.

But I fear me deciding to step back and keep all quiet is really selfish. I would appreciate any views. Thanks in advance.

I am not sure you you could square the premise of "raising awareness" with hiding your daughter's condition

It isn't a life sentence. It is very treatable. It is something that people live with not die of. I don't understand why you would hide it...will you ask her to lie when she is older ?

I am hopeful - or maybe deluded - that she won't have to lie or even explain things as she gets older. My hope is that medication will control the pain and stiffness and she will be able to live like any normal 2 year old (and onwards). Which is why I suppose I am asking myself the question.

It's early days I don't think you need to leap straight into raising awareness at this point. Stick a pin it until you've decided how you are going to approach discussing your dd's diagnosis.

If you do decide to go ahead with raising awareness there is no obligation to involve your dd as a poster child

That is very possible

But if you conceal the diagnosis, when will you "reveal" it ? Best she gets used to conversations about it while she knows no better, surely.

Thanks - good points all round. I guess I have been working on the "early days" theory mixed with the "she will grow out of it" delusion! I just so torn between my drive to raise awareness/funds and my sense that she is still so little. DS has allergies and I had no such qualms about moaning about sharing his story

I think you need to give yourselves time to deal with it

Your desire to release awareness and fund raise is admirable , but I suspect you might find that the " professional fundraiser " part of you might get into conflict with the " mummy " part .

Jings! Sober and on PC so apologies as no excuse for my shabby posting. What I was trying to say is that I wold hope she wouldn't have to explain her condition to anyone but close friends. But that in my heart I know that is unrealistic and that raising awardees may have more impact on her future.

Thanks KristinaM

DD has a pretty rare condition. I don't shout about it, but if I mention we're at the hospital, and someone asks, I tell them why. It really helps to have a story prepared which covers any questions they might have, particularly if you can end on a positive. As awful as this sounds, it makes it easier and less awkward for them.

I know someone whose child had a life treatening condition when she was about 3. Aftre a series of operations she is fine - now she is about 12

The family set up their own charity and have raised a lot of money for the hospital where the girl had her surgery . The childs life has been very busy working for this charity . I know she loves it and she has done lot of things which your average child will never do - meet celebrities,be on TVs, in the papers. She is well knownin the town where they live.

It's a great charity and I m sure that many other children will benefit from the money raised. But the charity has affected the childs life far more than the illness did. She's had a very different childhood from " normal" .

That's a good point. Thank you. Do you only tell people if they ask? Or do you have a stock response if they ask?

We don't want her to wear her condition on her sleeve, if swim, but equally it's not a secret. So yes, we're open if people ask but we don't tell people when they generally ask how she is.

I have a reasonably set answer - what it is, how we found out, what might have happened without treatment, how rare it is, how well she takes her meds, long term prognosis (which thankfully is great). I don't know how relevant that is to your DD's condition.

There's no rush to tell people. I think they understand if you need to get to a point where you've something good to tell.

Thanks - that's really helpful and I hope things go well for you and your DD.

I find support groups on fb very helpful. They're often private so don't even show up on your profile. We pass on what we've learnt from our doctors and help parents who have a new diagnosis. That might be somewhere else to ask for this sort of info.