I’m Gillian and I had a beautiful childhood growing up in Botswana in Africa. However, my face started to waste away during my teenage years, for a reason I didn’t know. At such a critical time in my life, it was hard to find self-acceptance.
I was only formally diagnosed with Parry-Romberg Syndrome in 2024, after having a conversation with Lukas Caldwell who has the condition. I’d seen his videos on TikTok and started putting the pieces together. Parry-Romberg Syndrome is a rare condition that affects the skin and soft tissue on one side of the face. The exact cause of the condition is unknown, but it is thought to be connected to infections, trauma and autoimmunity.
At twelve years old, I developed ringworm under my left eye. Doctors gave me topical creams to use but nothing helped. My eye became painful and swollen, and then my face started to shrink on that side. Every day, something else had started to change – I was having to manage feelings of identity loss.
If someone won’t accept me because of my condition, then I don’t want them in my life anyway.
I hated looking at myself, whether it was in the mirror or in photographs. One child called me ‘half a face’ which really upset me. I realised I needed coping mechanisms, so I educated myself, and became better equipped at dealing with hurtful comments. I also gained self-acceptance, self-love and self-confidence. It became clear that not all is lost when you’re different.
When I was 13 years old, I was voted the Leader of Academics in my school. I was always the best student. Every Monday, I would address the whole school and give them motivation and advice about studying and getting better grades. Whenever I stood on that platform, I built more confidence. I’m forever proud of that young girl whose face was atrophying but continued to show up every Monday to serve others.
I still experience staring, and I get inappropriate comments here and there, but I’ve become the girl who steps into a room, and everyone wants to know who I am. That’s powerful. Not only do I stand out because of my visible difference, but also because of the energy I hold. I’m confident and eloquent, and pride myself on being well put together. The world stops and stares, but now I don’t associate that with negativity. Being different is something special and I’m embracing it.
Gillian welcomes her ability to turn heads
While it has taken time to learn to love my appearance, it became a good social filter. If someone won’t accept me because of my condition, then I don’t want them in my life anyway. This helped me build a support network of people who genuinely care about me.
I know that I am more than my appearance, and if people can’t recognise that, then it’s their loss. Books about inner healing and personal development have been hugely helpful to me in forming this attitude.
As a community, we need to keep showing up no matter what. Think how lovely a future where we see ourselves represented globally would be. I’m looking forward to connecting with other people with visible differences and working on projects together, to prove that there is life beyond the mirror.
