What I've learned...
 

For many parents one of the hardest parts of the journey isn't just the illness itself. It's feeling like nobody understands. For years, families have faced disbelief, confusion, and a lack of awareness. Many parents have found themselves repeatedly explaining that their child isn't simply tired, unmotivated, anxious, or avoiding school. They are living with a complex, debilitating illness that can affect every aspect of daily life. That's why the recent increase in media cov

School is often where things become really visible. Not because your child suddenly gets worse, but because the expectations don’t change, even when they can’t meet them anymore. At first, you might try to keep things as normal as possible. Encourage attendance.Push through the tiredness.Hope it’s just a temporary dip. But over time, it becomes clear… This isn’t something they can just push through. When attendance becomes a struggle Mornings can become one of the hardest par

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