My name is Tee, I’m 20 years old and I’ve got a condition called anterior encephalocele. It’s a rare condition where part of the skull has not formed properly, so a portion of brain tissue sits outside the skull and must be operated on.
My condition has affected me in many ways. I’ve had seven big operations in total, which have helped me to do ‘normal’ things like spending time with my family.
Growing up with a visible difference wasn’t easy. Starting school and meeting new people have been particularly tough. Having said that, facing the world didn’t really bother me until secondary school. I was in the big, wide world then, making my own decisions and standing on my own two feet. It’s when I started noticing how nasty people could be.
I received some pretty horrible comments about my visible difference, including name-calling. I’ve been called alien face, space raider, potato face and much more. Some people have even said that I look like Auggie, from the film Wonder. Although Auggie is a great character and also has a visible difference, that’s where the similarities end!
The staring and name-calling made me very sad at first, but it also pushed me to become a stronger, better person.
My experiences taught me how to be a compassionate person. I learnt early on that making nasty comments about the way someone looks is unacceptable. I have first-hand experience to know that it can cause people to lose confidence and can even lead to self-hatred.
At the age of 16 I came out as bisexual. It was a huge step for me. My family helped me realise that I was still the same Tee, and it made no difference who I felt attracted to. At 18 I realised I was a lesbian.
People who are subject to stares and comments soon lock themselves away from the outside world. Loneliness and depression are too common for people who have a visible difference. Although painful at first, having someone to talk to helps a lot. It’s important to open up.
Social media isn’t always helpful if you have a visible difference. With photo-editing tools and filters, beauty standards are unrealistic and difference can be seen in a negative light. The anonymity of social media also doesn’t help. Trolling and hate speech can be an everyday occurrence online for someone who looks different. We all need to remember that everyone is different in their own way – whether you’re tall, small, thick or thin! We all have our own insecurities but embracing them and rising above the negativities will help you love yourself.
Luckily, social media isn’t all bad and it can be a place to celebrate difference. I tend to go on social media to help others realise that everyone is different and shouldn’t hide away because of how they look. Tiktok is a great space for this and I like to use my platform to inspire and uplift people who struggle with confidence. I go on Tiktok lives a lot to educate people around the world about my condition. I have anxiety, which sometimes makes it difficult for me to interact with people face to face. Speaking about my condition through a screen really helps with this.
At 20, Tee is more comfortable than ever with her appearance and sexuality
My friends and family have helped me get out of some dark places in the past and now I love getting out of the house with them for shopping trips, visiting the park, eating out and movie nights. They’ve been so supportive from the start. My mum, Michelle, my dad, David, and my twin sister, Nakiya are so supportive. I’m also in a relationship and my girlfriend makes me really happy. She’s stuck by my side since the day we met.
My family and my close family friends have helped me in so many ways in my personal life, particularly when I was confused (for years) about my sexuality.
At the age of 16 I came out as bisexual. It was a huge step for me. I didn’t know how people would take it. My family helped me realise that I was still the same Tee, and it made no difference who I felt attracted to. At 18 I realised I was a lesbian.
I’ve always worn ‘boyish’ clothes and hung around with boys – I was known as ‘one of the lads’. I cut my hair short and wore a fringe that covered my visible difference. It gave me more confidence when out and about and I still wear it like that today. I also listen to music through headphones on public transport which helps me block out the world, and feel safe and confident when out in public, particularly if people are staring at me.
At 20 I finally feel more confident and have started to like how I look. I like my body and am finally comfortable with my sexuality. I know who I am now, which makes a big difference in life. I surround myself with people that support me and love me. They brighten my day and boost my confidence. They push me to be the best version of myself and I am grateful every day for them.
I’m proud of how far I’ve come.
