invisible disability

Having a child with an invisible disability means living in a reality that many people do not see and that some struggle to understand. When, on top of that, doctors talk about a medical mystery and no clear diagnosis can put words to what we observe every day, the situation becomes even more complex. We move forward without a clear answer, but with one huge certainty: something is going on, and it has a real impact on our daily life.

What is most difficult is not only the exhaustion or the constant organisation. It is also the looks from other people, the judgment, the misunderstanding, and sometimes even the doubts of those who should be the closest. Some people think all of this is a trend. Others imagine it is simply a matter of upbringing, as if everything could be fixed with more firmness or discipline. But the reality is very different. Jaja is not a “badly behaved” child. He has a very particular way of being in the world, and above all, he has no sense of danger.

This is something we have learned to manage in everyday life, with habits that have become normal for us. Locking the car doors while we are driving, for example, has become second nature. Buying an oven with a cool-touch glass door too. These are details that may seem exaggerated from the outside, but they are part of the necessary adjustments to keep him safe. When a child does not perceive danger the way others do, you end up thinking of everything, all the time. And that is exhausting.

Jaja also has an EHCP, he receives a monthly DLA payment, and he has a Blue Badge. None of that was easy to get. It took a mountain of paperwork, evidence, explanations, repetition, and justification. These are not benefits given to everyone. They exist because there are real difficulties behind them, even if they do not come with a simple diagnosis. So yes, not having a diagnosis is frustrating, but it does not erase the reality of what we are living. It does not make our daily life any less real.

What makes things even harder is when other people do not make the effort to understand. Yesterday, when he came home from school, Jaja asked me, “Am I different?” and then, “Am I stupid?” And honestly, it broke my heart. Because behind those questions, I can tell that he feels the way other people look at him. I can tell that some children see him differently. I can also tell that even some adults do not always try to understand him.

What hurts the most is when people expect from him what they would not necessarily expect from another child. When he goes to chess club and has had a bad day, he may refuse to take part or be grumpy. He never hurts anyone, he never means any harm, he is just having a rough moment like many children do. And yet, when I pick him up and the teacher says, “It didn’t go well today, he didn’t want to play. If it’s the same next time, he won’t be able to come anymore,” I can’t help wondering whether she would say the same thing to the parents of a child considered typical. Did she even ask him what was wrong? Did she try to understand why he was shutting down that day?

Because at the end of the day, that is the most unfair part of all: Jaja is still a child. A child with emotions, with off days, with fatigue, reactions, and needs. A child who can be joyful, moody, funny, affectionate, or exhausted, just like any other. The fact that he has specific needs does not mean he stops being a child like the others. He has the right to have a bad day. He has the right not to want to take part. He has the right to be understood rather than judged.

And that is exactly why all of this is so hard to live with. Because between the people who do not see the problem, those who minimise it, those who reduce it to a question of upbringing, and those who look at him with suspicion, we end up having to defend all the time what should be obvious: our child needs to be protected, respected, and understood. Not seen only through his difficulties, but met for who he truly is.