What I've learned...
 

One of the hardest lessons I had to learn as a parent wasn't about CFS/ME. It was about disappointment. Not my own. Other people's. Because before chronic illness became part of our lives, I spent a lot of time trying to keep everyone happy. I didn't want to let family down. I didn't want to cancel plans. I didn't want teachers to think I wasn't encouraging my child enough. I didn't want healthcare professionals to think I was being overprotective. I didn't want friends to t

When you’re in the thick of it, you end up hearing a lot of advice. Some of it helpful. Some of it overwhelming. And some of it that just doesn’t seem to fit your child at all. And that can leave you wondering… What am I actually supposed to do? There isn’t one single answer One of the hardest truths is that there isn’t a quick fix. What helps one child might not help another. What works one week might not work the next. And that unpredictability can feel frustrating when all

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