For many children, being born with cerebral palsy and knowing about it in childhood, brings with it the clarity and resources to navigate life with the condition. For me, a diagnosis in my mid-forties shifted decades of lived experience with an altogether new, but difficult focus. Finding out about a cerebral palsy diagnosis so late has provided a fresh perspective, allowing me to reframe decades of challenges – to finally take a more active role in shaping who I am and my life.

With a disability I am different

Growing up undiagnosed, I sensed my experience of the world was different. I faced physical challenges that others with a diagnosis could navigate better with support, but without a clear reason for those challenges, I continued to assume the difficulties were personal limitations, not down to a disability. As a result I lost confidence in myself, which in turn made me hesitant to make my own decisions or assert my independence because I was constantly adjusting to the abilities and expectations of my family, of those around me and in school.

The Root Cause of a 'Disability' is Important

Without the context of Cerebral Palsy, it was hard to recognise the additional physical and mental energy required to perform daily tasks. Without knowing the root cause, I came to internalise my physical, mental and emotional struggles as personal failings or as weaknesses of character, rather than as symptoms of a neurological condition. This is the point.

Disability Impacts Differently

A rather late diagnosis has been instrumental in helping me understand these dynamics. Cerebral Palsy affects movement, posture, and muscle control, typically due to brain damage occurring before, or shortly after birth. The impacts vary widely between individuals, so a diagnosis as an adult often means looking back at years of adapting to physical and social challenges, without the benefit of knowing why those adaptations were necessary. This understanding has provided a new lens through which I can view both past experiences and current circumstances.

For years, others took the lead, but since receiving my diagnosis, I have become empowered and challenged to change my perceptions. Knowing that many of the challenges I faced weren’t due to a lack of effort or ability, has given me an altogether different perspective, for the first time allowing me to see myself in a kinder, more self-compassionate light. On my late diagnosis, and for the first time I have been able to advocate for my needs and preferences, in all aspects of my life – I also see that my lack of determination or resilience as a child were rooted in something real, something beyond my control. To put it mildly, I had no control.

Conclusion

Living with cerebral palsy, especially when diagnosed later in life, involves continuous learning, adaptation and acceptance. It has given me new insight into how deeply our understanding of ourselves can impact our choices, and self-worth. My late diagnosis hasn’t solved my challenges, but it has clarified that personal control and self-acceptance are something I now have control over. Today, I am focused on building a life that reflects a more complete understanding of my strengths and needs, one that allows me to live authentically and with a greater sense of autonomy.

Yes, for the first time in my life, I look in the mirror and see someone strong, someone courageous – someone ready to continue her journey with intention and self-compassion for her needs. More importantly someone who finally feels free for knowing about her.