Wednesday, 15 May 2019


I don’t know what it feels like.

My daughter has Prader-Willi Syndrome and it affects her life and our family’s life every day, but I don’t know how it feels inside her head.

I don’t know what it feels like to be hungry all the time. I don’t know what it feels like to have anxiety levels that can be overwhelming. I sometimes imagine her worries to be like a swarm of bees, humming and buzzing in the background, but I don’t know what it feels like.

Flip the coin, though; I do know what it feels like when I watch my daughter cope, and I do know what it feels like when she surprises me.

Like today, when she came home from college, beaming, showing me a booklet she’s been working on with her tutors about mental health awareness.

“I did really well today, Mum. Look at my big list of anxieties I made.”

shut down
not talking
random words
stomach turning
blood heart go quicker

My first thought was "That sounds like my symptoms after a hen night involving ill-advised consumption levels of tequila", but my second thought was "That’s a pretty self-aware list".

She was really proud of herself for writing out the feelings and ways in which her anxieties manifest themselves. (Although she’s never fainted, so quite where that one came from I don’t know). And I felt proud too. It’s actually a pretty good check-list, and a demonstration of the very different ways in which her mental health issues can surface.

It’s a bit weird, isn’t it, a parent and a child smiling at eachother and high-fiving over a long list of ways she demonstrates being upset? 

But when it comes to PWS, weird is normal and normal is odd. I can’t get inside her head when she’s being amazing, brave and strong, but I really hope it feels good in there. It should. 

We've been helped hugely over the years by the PWSA UK (Prader-Willi Syndrome UK) - an amazing charity who do tremendous work supporting people with PWS, their families, and professionals who work with them. To find out more about the condition and the charity click here .  If you can spare a few quid please click on the Donate Now button on the right hand side of their home page.

Song is Ty Segall - Feel

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