“My parents had no idea about my condition before I was born. My mom was actually the one who found my ‘little hand,’ as we call it, when I was put on her chest after being born. She went to uncurl my hand… but there were no fingers there! They were instantly accepting and as far as I’m aware, it didn’t phase them in the slightest. I think there were a few worries about what I would or wouldn’t be able to do initially, as I suspect most parents would. For example, my mom was a knitter and her thought was, ‘Oh no, she isn’t going to be able to knit!’ (I can!)
Growing up with a limb difference had its good and bad times. I don’t know any different and a lot of kids have a tough time growing up, but it wasn’t smooth sailing. I had a super happy childhood and it’s not until you go to school, where kids are old enough to know and understand differences, you really realize you are different! I do remember feeling really frustrated at times because I didn’t think I could do something and didn’t have the patience or confidence to work it out on my own.
There was no one like me in my schools or at the park. In fact, I didn’t see anyone like me until I was in my teens because we didn’t actually have a name for my condition until I was about 15 and we went to see a specialist who gave us the name, ‘Symbrachydactyly.’ At times, I felt like it was only me in the world with a little hand, which felt quite lonely and scary because as much as your family and friends love you and support you, they can never truly understand how you feel or what it is like.
My parents, family and friends always loved my little hand, and would tell me, ‘It’s special to be different.’ I remember asking my parents as a child, ‘Why is my hand like this?’ and they simply replied, ‘Because you were born special and unique and it makes you an extra special person.’ My parents were amazing growing up. They never made it into a problem, they didn’t wrap me up in cotton wool because I had a limb difference, but they also dealt with the times I would show upset. I wasn’t actually ever made to feel ‘different’ by them and I don’t ever remember my big brother being phased by it at all.
I did hide how I felt about my hand, though. I would come home upset from school and talk about that with my parents but other than that, I kept a lot of it in and didn’t tell them because I didn’t want them to feel bad. I was worried if I really shared how I felt with my parents, it would make them feel guilty, and I didn’t want them to feel that way because it wasn’t their fault and they couldn’t have done anything differently. I’ve always been really conscious of that.
Bullied For Limb Difference
I struggled with body image growing up, being in a ‘perfect’ world. There were a lot of mean words shared in the playground. A lot of, ‘Eww, what’s wrong with you? I don’t want to touch that hand,’ and ‘It’s disgusting.’ I would act like I could laugh it off and turn it into a joke so people couldn’t see the damage it was doing. Receiving comments like this makes you feel so alienated and disgusting. I still remember exactly how it felt when people would say mean things. Because it was something I was born with, it made me feel disgusting, ashamed of myself and it was completely soul-destroying. Something that was previously so normal to me suddenly became abnormal and unchangeable. Every one of those comments was degrading, it was damaging to my confidence and how I felt about myself.
When I was a kid, it was magazines, then social media started to become big and the one thing the two had in common was portraying the ‘perfect person.’ I never saw anyone like me in my everyday life, let alone on TV, in magazines, books, anywhere. With nasty comments and never seeing anyone like me in my everyday life, it suddenly became a dark, lonely place and I used to wish on every star, ‘Please could I just have two normal hands?’ I hated my hand, what it looked like and the things I thought I couldn’t do because of it. When you have people pointing something out about your appearance, you suddenly become self-conscious about your whole self. I’s a very slippery slope of thinking everything about you is disgusting and weird.
I thought nasty comments would stop in adult life, but when I was 18, I was working in a cafe and a man in his 60’s with his wife came in. I went to serve them and in a rude, blunt manner, he said, ‘Been biting your fingernails?’ I thought it was a very strange comment because I don’t bite my fingernails. I ignored it and continued to do what I was doing.
He repeated it another two times, getting angrier… and it suddenly clicked. He was on about my little hand. I got this sinking feeling and one of those moments where you want the world to swallow you up. I think my face said it all as I looked at my hand, because he said in his rude manner, ‘Why you like that then?’ I sadly said, ‘Well, I was just born like it.’ It really shocked me and I walked to the back. My boss must have noticed the shock in my face and as soon as she asked if I was okay, I bursted out crying. Now I know I don’t owe anyone an explanation when they are being rude!
My condition itself as a physical thing hasn’t been a barrier at all. I thought it was, but it wasn’t. My mind would tell me I couldn’t do things, and with my confidence being stripped, I would give up before trying. I guess to save myself the disappointment and embarrassment of failure, it was easier to just decide I couldn’t do it and let it beat me. I’d skip out on things and say I couldn’t do it, even if I enjoyed it. I’d hide my hand, cover it up, wouldn’t let people hold my hand and if they did, I would ask if they could switch to the other side. I’d worry about first impressions, because I do some things different than other people. Although I would not try sometimes, I still always have this burning determination in me to prove people wrong and with encouragement from family, friends and teachers to bring that out in me, I would go for it.
For me, the toughest part about living with a limb difference was learning I am not the names I’ve been called, realizing I’m not alone, finding there is a whole community of people out there, and not letting my head win by giving up before trying. It is hard growing up ‘different’ from everyone else around you but once you see the beauty in being different, you are unstoppable.
As a little girl, I went to ballet classes, where the ‘favorite’ girls in the class would pick on me. The teacher said, ‘You will never be a dancer.’ I gave up dancing for years because of this, but in high school, I picked it back up and went on to do it for my A-Levels in which I got distinction. I had incredible high school teachers who helped me see what I was told as a kid was wrong. I went on to get an independent dance teacher qualification, run my own dance fitness business, and choreograph for an international carnival group.
Once I found out about my condition and had a name for it, I could then research it, find facts and start to learn about my condition, that for 16 years, we didn’t really know about. I realized I wasn’t alone at all. There were people just like me, and a lonely, dark place started to let the sunshine in. From there, my confidence with my hand started to grow. The hate went from a dislike, to ‘It’s alright,’ to ‘I think I like it,’ to now, where I love my hand and wouldn’t want it any other way!
Once I accepted my hand, everything else started to change. Before, I’d think all people that stared or made a comment were being outright cruel and that’s why I was so self-conscious and would want to hide my hand. But I learned that wasn’t the case at all. A lot of the time, it’s shock that causes people to say things or pull a face. I realized the difference between people’s reactions. People pull faces and blurt a rude/sarcastic comment out of shock because they haven’t seen a hand like mine before. Some people stare because they are intrigued and wonder if what they saw it right, and some people, unfortunately, are just outright rude. I realized I shouldn’t judge people for their reaction because, for most of my life, I didn’t see anyone like me or know about my own condition, so how can I blame anyone else for being intrigued?
I couldn’t tarnish everyone with the same brush because of the bad experiences I’d had before. We are only human, and humans react in funny ways without meaning to sometimes. When this clicked, my hand suddenly became a lot easier to deal with and I found myself being more concerned for others than myself. I don’t want to make someone feel bad because they react in a human way.
Social media can be a hard place. You can get swallowed up in the ‘perfect’ world people portray, but it can also be the most inspirational, wonderful place and it’s been so important for me to connect with other people. I’ve made friends for life from all around the world and I feel so incredibly lucky for that. The community is so beautiful. I feel so proud to be a part of it and knowing I have people that can relate and understand is incredible. Social media helped me find incredible charities and groups such as the Lucky Fin Project Reach charity, I Am Possible Foundation and LimbBo Foundation.
The first time I posted about my little hand, people started messaging me. They were thanking me for talking about it, and I couldn’t believe it. I couldn’t understand why they would be thanking me. From there, I realized I needed to be more open about my hand. If I never saw anyone like me, I needed to make sure the next generation does. They need to see people like them, to not only normalize it for themselves, but to normalize it for everyone.
The more I post about my hand, the more people have reached out. I love having conversations with people about it, whether it be helping a parent of a new-born with their worries or just being able to relate to a teenager that is struggling. Knowing I can use my pain to help and make people feel better, makes it all worth it.
When receiving negative comments online, I just block and delete. Everyone is welcome to their own opinions, but it doesn’t mean you have to keep them there if you are trying to create a positive space. There is absolutely no shame in blocking and deleting! Over the years I have learned not to rise to these comments. Instead, I just point them in the right direction to be able to educate themselves and try and create some understanding.
In 2019, I was on a TV program in the UK called Flirty Dancing, which was an incredible experience and it allowed me to speak about Symbrachydactyly to a bigger audience. The show is a blind date, but it is no ordinary date… you both learn a dance separately and the first date, the first moment seeing each other, is when you are doing this dance together! The dance was choreographed in a way when I turned around, I lifted up my little hand. So not only was he seeing me for the first time, but also my hand. I was so nervous about this because previously people have reacted strangely without meaning to. I didn’t want to make him feel uncomfortable or feel bad. But I also loved this moment because I was putting my hand out there straight away.
One of the things I’ve struggled with is knowing when to mention my hand. I’ve had experiences where people almost feel cheated out of something or tricked they didn’t notice my hand straight away or I didn’t point it. It turned out to be a beautiful moment in the dance. He looked at my little hand, then looked at me, smiled and we carried on. It was a beautiful bit of choreography I’m so glad they put in and pushed me out of my comfort zone. When the show was airing, I prepared myself for negative comments. I remember speaking to my dad and justifying how I felt, and my dad turned around and said, ‘Lily, you do not need to justify how you feel. No one can tell you how you feel. They have only seen a small part of what you were saying because it has been edited down, they don’t really know you.’
He was right, I didn’t need to justify my feelings at all, they don’t know me, they were just seeing a small part of me and I use that with all kinds of comments I get now and when giving advice to people… I’m not just a girl with limb difference, there is so much more to me.
Spreading Symbrachydactyly Awareness
I will keep striving for change, keep trying to normalise limb difference, keep being loud and proud, and posting on social media to raise awareness, in hope that no child will ever feel the way I did. I hope the next generation with limb difference can just be unapologetically themselves! I really think the future is bright and the next generation is accepting and not phased by things like limb difference.
Being different isn’t a negative, I don’t know where we ever got this idea from. Being different is special and amazing. We shouldn’t be afraid of being different. We should be afraid of being like everyone else. It would be boring if we were all the same! What makes you different makes you beautiful and unforgettable.
To anyone reading this who is struggling, it was a long journey to get to where I am now, and it wasn’t always an easy one, but it doesn’t matter how long it takes if you know there is a light at the end of the tunnel. I can promise you there is. Just take small steps, reach out, push yourself out of your comfort zone bit by bit. There can be some up and downs, but once you get to accepting and loving who you are, it is so worth it. It’s okay to sometimes slip into old habits and have down days about things you’ve overcome, but it doesn’t mean you are going backwards!
Sometimes even I have a moment of, ‘Eww my hand is so weird,’ and for a second or two think, ‘Maybe it would just be easier with two normal hands.’ I would be lying if I said I don’t get nervous to meet new people and that is okay! I let myself have a moment with those thoughts and then I remember how far I’ve come. My hand is a little weird, but so am I. It would be boring to be the same as everyone else!
I would not be the person I am today without my hand, all the good, the bad, the ugly and beautiful that has come with it. It makes me different in the best way. I’ve done things I never thought I would do and ultimately, I don’t care what other people think. Everyone struggles sometimes, even the most confident people. It’s all about the next step… feel it, remember it, learn from it and unapologetically be yourself! You are unstoppable and can do anything you put your mind to, even if someone tells you otherwise. I wouldn’t change my little hand for anything in the world. It’s made me, me!”
This story was submitted to Love What Matters by Lily George from Sandown, Isle of Wight, UK. You can follow her journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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