Alan's Story

"The downs you feel are worth the highs you'll live"

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Growing up with vertebral and limb differences meant navigating a world that didn’t always understand me. I often experienced unexplained pain, stiffness, and fatigue during activities that other children seemed to find effortless. I also lived with visible scars and differences in my limbs, which made me feel even more aware of how different I was.

School could be challenging.
Peer mockery and institutional ignorance often made everyday life difficult. Kids would point out my differences and I heard cruel comments like, “Look, it’s Frankenstein!” Even routine moments could be hard. For example, during assembly, the expectation to hold hands in line caused anxiety due to my bent thumb and wrist scars. Teachers would solve this by moving me to the back of the line, highlighting my difference. Holding a pencil caused pain, yet I was reprimanded for not holding it “correctly.”
Physical Education, which included touching toes or jumping in bare feet, became known as

“Mrs T’s torture time.”

Learning to Handle It
I didn’t have a formal plan. Children are resilient, and I learned to adapt. I made light of my differences, turning my bent thumb into a likeness of the Hunchback of Notre Dame. All part of the “Grand Plan” because if you control their laughter you are making them laugh instead of them laughing at you. No deep psychological thoughts, merely a kid trying to survive.
My double-jointed left thumb became my party trick, bending it like Mr. Fantastic from the Fantastic Four to amaze or impress others.

Daily life can be exhausting
After undergoing multiple operations, my anomalies are less noticeable, but my but my limitations remain. Thumbs still function as they always have. Wrists are inflexible, pain, fatigue, and loss of dexterity are ongoing. Society often misunderstands lifelong disability, frequently comparing it to temporary
conditions like a “bad back.” Even simple tasks, such as shopping, can draw unwanted attention when I move more slowly than others expect.

Throughout my working life, expectations were often greater than what my body could realistically manage, yet I felt a constant need to appear as though everything was normal.

“Nothing to see here, just a regular Joe getting on with his work”. 
Much of my working life took place before key legislation such as the Disability Discrimination Act 1995 and later the Equality Act 2010, when there was little emphasis on reasonable adjustments, flexible working hours, or lighter duties. The cumulative effect of this has been, quite simply, exhausting.

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Finding My Way Through
In the early days, I was purely and simply “winging it” Now, things are different. Therapy, learning to be kinder to myself, and gaining so much insight from others. I no longer beat myself up over the times I once felt I had failed; instead, I’m learning to just be me. I may talk a lot, but people still come back, and having friends who share either this whole condition or even just one part of it brings a real sense of
connection. Those conversations feel energising perhaps even more so now than when I was younger. These days, “winging it” is no longer an option. I’m sure you’ve seen that notice “Prior Planning Prevents Poor Performance”.

How These Experiences Shaped Me
From a young age, I developed a lively personality to navigate social challenges. I became thoughtful, polite, humorous, and self-deprecating to deflect negativity. I became the protector of the “over-weight kid”, the “Kid who was a different colour”, the kid that looked different”. Not a hero!!! Just a person who will not tolerate others being bullied. Unless that’s me being bullied in which ignore, talk, talk more, find a safe exit. Sometimes, no other option but to defend myself. Oh, and never cry…
My childhood experiences inspired my desire to help others. First training as a nurse then working for over 30 years supporting people with mental health challenges. I became a staunch advocate for equality, ensuring accommodations and fair treatment for all. I also found strength in connecting with others facing similar challenges, learning that I am not alone.

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What Might Have Made a Difference

• The most impactful support would have been having a better insight to my condition. I always compare living my life to a person who has just bought a new piece of furniture in flat-pack form but discards the instructions with the box. I didn’t listen to Doctors, I didn’t listen to physios, there was a world out there and I had to be a part of it.

• Adjustments in school and work that recognise differences, rather than forcing conformity.

• Access to tools, policies, and understanding that allow individuals to thrive without pain or exclusion.

Advice to My Younger Self
“You’re going to have a life with love and meet the most genuine people you could possibly imagine”.