Discovering a childhood diagnosis later in life often brings a response similar to grief. It’s a common and natural process. It's taken decades. I’m still trying to understand what I feel now, knowing what I know. There’s anger – but also disbelief, and numbness that this was my life.

What’s hardest isn’t just that something was missed, it shouldn't have happened. That’s where the anger comes from – the people, the systems, the places that were meant to see me clearly, and didn’t.

This went beyond simple oversight.

Identity was something I largely set aside, because there was no explanation – nothing to anchor understanding. At school, I struggled to make headway. Teachers would say, “Ilana’s a lovely girl, but...” my father when confronted by the school told the head teacher, my difficulties were down to a memory problem. What I discovered decades later was that they already knew, but never acted on it.

They didn't leave me with a choice, my life was always going to come to this, for me to begin the process of writing, of talking about my experiences – revisiting memories with a new understanding, and slowly releasing responsibility for experiences that were never mine to carry. I was a child.

Failing exams, falling behind in course work, continually being misunderstood and judged, teachers trying but failing to convince my parents, that intervention was necessary, also struggling with milestones and cues – these weren’t my personal shortcomings, but the result of being unsupported with what I later learned was a disability and neurological differences.

I’m doing this to make sense of my past, so after decades I don’t carry it in a way that makes me unwell.

This re-framing is painful, but it is gradually becoming liberating. It has been a lot for me to carry. 

A helpful shift for me has been:

I didn’t fail. I was navigating life without the map others were given. I was born different.

Over time, I internalised blame, particularly around my learning. And yet, part of me must have known it didn't belong to me, because I didn’t carry any expectation of myself in school. I was also, in some ways, being protected because my twin went first, and I followed. 

There was no choice. The expectation was that my twin would lead.

Learning and speaking the truth now is helping me to separate my character from my challenges.

I’ve spent a lifetime trying to do that – so that I’m seen and judged fairly.

Even now, there are times when I’m not fully understood, and I am judged.

This isn’t mine to carry. What others make of it is theirs.

I didn't fail – but I also didn’t win. 

Ilana Estelle is a mental health and wellbeing advocate who combines educational insight with her personal experience of living with physical, mental, and emotional disabilities. She holds diplomas in Counselling, Diet and Nutrition, Nutritional Therapy, Psychotherapy and Counselling, and Stress Management. Through her writing, Ilana supports others in navigating their emotional, mental, and physical health challenges. In addition to writing for The CP Diary, her work has appeared in healthy lifestyle magazines. Ilana is also the author of three books: Cerebral Palsy: A Story – Finding the Calm After the Storm, Spirituality, Healing and Me, and Survival: The Covid Years – Time for Change.

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