Strategies for coping with the diagnosis of a chronic illness

[Starlet]

Hello!!

I am wondering if anyone has any wisdom for me. I am wondering how other parents cope when their child is told they have a chronis illness. (The illness doesn't matter, but FYI it is Crohn's disease).

My little one is quite well at the moment but I worry about the future and the suffering ahead as it is a lifelong condition that can't be cured only managed.

I can't find any support groups for families with children with this. And more than anything, I think I would benefit fom trying to develop some more helpful thinking (ie positive thinking) especially so I don't pass on my anxiety.

So if anyone can tell me how they have been able to cope and start feel OK about their child having a condition, I would love to hear from you. I don't want my negitivity to consume me as it has done in the past.

Thank you in advance.

Starlet

[emc2]

I don't know if this helps but there is this organisation

~ Crohn's and Colitis Australia

And they have these groups ~ I notice in North Adelaide someone is trying to organise a pediatric group, so maybe you could contact that person, they would obviously have a child with the condition.

Crohn's and Colitis Australia

Hope that helps.

[briggsy's girl]

i would be looking at finding support networks for parents of children with the disorder - either locally or online - to get in place coping mechanisms for when things do get bad, to find people that understand how you're feeling etc.

if you feel that your anxiety is going to become an issue, speak to your GP, maybe get some counseling to help with working on coping mechanisms


for me, i think it would depend on what the chronic illness is. i've had a high level of exposure to some things (friends with Crohn's and was being tested for it myself) - so i don't think i'd be stressed about it. i'd be seeking out assistance with how to address the issue both short and long term with the child, family, friends etc. what diet is going to help, what triggers will make it worse. teaching the child from as early as possible why certain things are a no go - making them aware, making those who may have reason to be responsible (grandparents etc) aware as well.


i guess a way to try and not let negativity consume you is to focus on the positives - you have a child that isn't currently unwell. you have a diagnosis, so you're not living in fear of what MAY be wrong - you know what's wrong, so you can be proactive in managing it etc. Yup, there will be days where things aren't going so well, and you'll feel bad - but if you're proactive now in learning as much as you can about management of it etc, it will help. and build your support network now while things are good - so they're there if/when you're having a tough time

[Khaleesi]

I don't have a child with a chronic illness, but i have a chronic illness.
I was diagnosed at 18 with Ulcerative Colitis.

If you google IBD Support i've seen some parents post in there. Someone in there might be able to point you to a better forum or they might even be able to help you with your questions.

Anyways i wish you & your little one all the best.

[Traveller]

I found joining a support group for parents in exactly the same position to be extremely helpful. For me it was the national deaf children's society, and it gave me a chance to speak to other parenta who had been where I was and come through the other end. I also spoke to adults who were diagnosed as young children which was a brilliant reassurance for me. They also helped me go through the grieving process because when you find out your child has a long term illness or disability there is often a period of profound grief as the diagnosis sinks in.

I also found being very proactive helped me. I learnt everything I could, asked about a million questions, and became an advocate for my child again. Big hugs, this cant be an easy time for you

[Starlet]

Wow! I couldn't believe when I logged on - there were so many replies! Thank you!

Thank emc2 - I will look in to Crohn's and Collitis and try to find a Support Group. I am keen to find one that has parents of kids with the condition.

You are right Traveller about feeling like greiving. I am keen to 'move on' from greiving to coping!!
Brigsey's girl -thank you for your reply as well. I was thinking about what you were saying about my negative thinking and I think I should have a positive statement planned to repeat to myself when I start thinking the negative type of thoughts . Maybe I can re-program myself!

And Thank you Cheshire, I will have a browse in the IBD Support section.

Thank you for such thoughtful and promt replies! I felt really comforted to read them.
Starlet