Megan's Visible Difference Story

Megan’s Visible Difference Story

Megan has Sturge-Weber Syndrome, a rare condition associated with a port wine stain; which for her is on her forehead and upper eye-lid area of one side.

I’ve got used to the fact that people will stare, especially when I have my laser treatment, but it doesn’t make it any more comfortable – and certainly doesn’t make it right.

I have a rare condition called Sturge-Weber Syndrome with the side effect of long-term epilepsy and complex needs. SWS is a neurological condition associated with a port wine stain; which for me is my forehead and upper eye-lid area of one side.

I was diagnosed aged two, but when I was born my parents knew I was different due to my port wine stain. I had developmental delay as a child and when I was getting diagnosed, I stopped talking and had short term hemiplegia.

School started off fine, but when I was seven I had to change schools because they weren’t supporting me. I moved school with one other girl who ended up being my only friend throughout the rest of junior school. None of the other children accepted me.

It got worse when I had to walk into school for the first time having had my laser treatment. Everyone staring, even some of the teachers. And when it came to looking after my skin I felt embarrassed because no one else had to apply oils or creams, or wear a sun hat. I felt like a joke. I ended up isolated. No one would talk to me except my brother and one friend.

I wanted to be invisible. I always felt like an outcast; that I was never going to fit in. So, from then on, I spent most of my breaks hiding in the bathroom or the woodland area – and when I could, with my friend helping out in the library. So, at a young age I developed high anxiety around any social situation – being fearful of being judged because I believed I had done wrong as no-one ever seemed to like me.

Health difficulties when I was a teenager meant I missed out on a lot of school, leading to home tutoring. But now my health is more stable and I’m hoping to do a pre-degree in art.

On a day to day basis my life is great now, but when it comes to going out in new situations I struggle with my self-confidence and tend to shy away or avoid going. I’ve got used to the fact that people will stare, especially when I have my laser treatment, but it doesn’t make it any more comfortable – and certainly doesn’t make it right.

I’ve noted people put up barriers – whether that’s out of fear or not being open-minded to listening to other people’s stories. We need to change. It’s time to have a new outlook on differences. I wish people could see there’s no need for conflict or casting judgment on others based on their appearance.

When I was younger, if I’d had friends with similar difficulties or experiences it would have made a massive impact on how I viewed my self-worth and reassured me I wasn’t alone.

Now that I’m older I’m able to go out not bothering with make-up to meet with close friends on my own, with no fear of judgment from others. If only someone with a similar condition could have been around to tell my seven-year-old self that the judgment of others is their problem not mine.

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