13/05/2026
Today is ME/CFS Awareness Day.
My son came out of school when he was 12 because of ME/CFS. For a long stretch, he was severely ill and bedbound. I'm not going to write one of those posts that wraps it all up with a bow, because the truth is messier than that. Not everyone gets better. Some people live with this for years. Some for life.
So this isn't a post about hope, or recovery, or silver linings.
This is for the parents who are in it right now.
The ones watching your child disappear into a body that won't cooperate.
The ones googling at 2am.
The ones who've been dismissed by doctors, schools, family members, friends.
The ones running on empty and still showing up.
The ones drowning in guilt for things that were never your fault.
The ones who don't know where to turn, who feel like you're failing on every front, who have almost nothing left to give and are giving it anyway.
I see you. I've been you. I know what it's like to be the mum of a really sick kid, in the middle of it, with no map and no certainty and no capacity left over for yourself.
I'm not going to tell you it will all be okay. I am going to tell you that you are not alone, that the love you're pouring into your child matters more than you can see right now, and that it is allowed to be this hard.
Sending love to every family living with ME/CFS today. I'm thinking of you. 🤍