What I've learned...
 

There’s a kind of loneliness that comes with this journey that’s hard to explain. From the outside, life goes on as normal. Other families are busy with school runs, activities, weekend plans. And meanwhile, your world has quietly shifted. When people don’t quite get it Friends and family might care, but they don’t always understand. They might say things like: “At least it’s nothing serious” “They’ll bounce back” “Have you tried just getting them out more?” And even when tho

One of the hardest parts of this journey isn’t just what your child is going through. It’s trying to get other people to understand it. You go to appointments, explain the symptoms, describe the exhaustion, and somehow leave feeling unheard. “It’s probably just a phase.” “They need to build resilience.” “Let’s wait and see.” And you sit there thinking… but this isn’t normal. When you start to question yourself After a while, it can get into your head. You replay conversations

There’s often a moment. Not always dramatic. Not always obvious at the time. But when you look back, you can see it clearly. A shift. Maybe it was when they stopped going out with friends. Or when getting ready for school became a daily struggle. Or when they said, “I’m just so tired,” and you could hear something different in their voice. Before that, life felt… normal. Busy, maybe. Full of plans. Full of possibility. And then, gradually or suddenly, things changed. It’s not

It’s one of the most frustrating things to hear. “They’re just being lazy.”“ They need to push through it.” "They’ll be fine if they get on with things.” But deep down, you know that’s not what you’re seeing. This isn’t reluctance.This isn’t lack of motivation. This is a child who can’t, even if they want to. When effort doesn’t match energy Children with early signs of CFS/ME often try to keep up at first. They go to school. They push through. They try to act like everything

At first, it’s easy to explain away. “They’re just tired.” "It’s a growth spurt.” "Teenagers love their sleep.” You tell yourself all the normal things, because you want it to be normal. But then something doesn’t quite sit right. Your child isn’t just tired after a long day. They’re exhausted after doing very little. Getting ready for school feels like a huge effort. They come home and go straight to bed. Weekends don’t recharge them anymore. And slowly, quietly, you start t