Supporting a child with an invisible illness

[Ngaio-RO]

Thanks so much for sharing that @taziness If you want to start a thread on the DBT stuff, that would be great.

It's so wonderful to hear you're focusing on your self-care @Big_Crab That is an essential part of the process. Exactly as you say, if you don't look after yourself you won't be able to look after anyone else.

When you said your daughter is interested in special effects makeup it reminded me of an old friend of mine who had severe social anxiety and he loved special effects. He trained in that area and got to a point where he would work alone in a studio in his home, building masks etc. for sci-fi movies and tv shows. Just something for your daughter to consider.

[Big_Crab]

Hi everyone, Just wanted to give you all an update. My daughter has named her illness 'Stephen'. We have found with the disassociation she is able to cope better with what is happening to her. In the mornings I ask how she is, and how Stephen is. Most mornings now she says she is good. Stephen may be in pain, or not feeling 'peachy' (her term) but she is good. I know this might sound strange, but by doing this she seems to be not getting so despondent. Has anybody else done this?

[Ngaio-RO]

This doesn't sound weird at all @Big_Crab It's a great practice to use, especially around pain.

When I was a kid, my Dad was very New Age so whenever I was sick or injured he would always get me to describe it as a separate entity.  It's an approach that helps the sufferer not feel overwhelmed or controlled by the pain.

But mostly I believe that people with chronic pain or illness should utilise WHATEVER works. If it's providing any relief to your daughter then it sounds like an awesome idea!

[taokat]

Thank you for the update @Big_Crab. I think that's awesome an idea. It must really help your daughter having a different thought process about her illness. Being able to separate and not feel that her illness is who she is, is very empowering.

And you are clearly an amazing support for your daughter which shows what a loving mum you are. 

I agree with @Ngaio-RO, whatever works. That's the only thing that matters. 

[Big_Crab]

Hi all, just wanted to give you all an update.

My daughter is going really well. Since we started calling her illness 'Stephen' she has differentiated herself and while she still has pain on a daily basis, she is not letting it define who she is anymore.

She has also enrolled to do a Bachelor of Criminology and Crime and Justice Studies online through Open Universities Australia. It is the program offered by a University and she can take up to 10 years to do it so if she has to go to hospital appointments or anything it is not going to interrupt her studies.

Thank you all for your suggestions, and support. 

[Ngaio-RO]

Hey @Big_Crab That's such great news!! 

And a great suggestion!  Thank you for sharing that.

[taokat]

That sounds so positive @Big_Crab! I'm so happy your daughter has been able to untie herself from the belief that her illness defines her, that's just awesome. I really hope she enjoys her degree and the flexibility is wonderful.

Thank you so much for the update