Guest Posts by Hairy Warriors

Maya, Day 03: Honesty over Silence

Maya, Day 03: Honesty over Silence

My name is Maya Spencer-Berkeley and I have a rare genetic skin condition called Recessive Dystrophic Epidermolysis Bullosa. In simple terms, I am missing the proteins that hold my layers of skin together which means my skin blisters and tears from even the slightest touch. Although categorised as a skin condition, it is much more than that. As well as the damage it has caused my external body, I have a narrowing in my throat which causes me to have trouble swallowing and therefore have to have an operation every 4 or so years to widen it otherwise I get blisters in my throat as a result of the choking. I was diagnosed at the age of 18 months when I started getting blisters due to crawling. EB only affects approximately 5000 people in the UK and 500,000 worldwide. Being so rare, this condition can be extremely lonely and isolating.

My condition has worsened drastically in the last few years and has meant I’ve had to reluctantly leave my job of two years. Being unable to work for the last year with no idea of if or when I'll be able to return has left me feeling very lost and stripped of my independence. It's been a massive adjustment and I’ve only very recently come to terms with it. 

My body has undergone a number of changes in the last year. Not only have I gained scars across my entire body due to scratching, but I have also gained a lot of weight which has been very difficult to come to terms with. Maybe even more than my skin. I have always had a very slim physique and I have always been very conscious of my weight. There were a lot of factors that have contributed to my weight change, including medications, being less active and a heightened appetite. Learning to accept this body has been an exhausting battle but I have had to fight all the thoughts of my old body because thats exactly what it is, my past body. Its no use looking through old photos and craving a body that is not mine anymore. I am no less beautiful or any less worthy or wonderful. I am still me, no matter what my body looks like I deserve to feel happy and confident in my body. Weight, scars, anything that makes you different just adds to why you are beautiful. 

The choice to fight is a choice that I’ve often struggled with. How do you keep going when you no longer see a point? How do you get up each day and appreciate the wonderful world that we live in when everything looks grey? I don’t think theres any one way to get you through the dark days but focusing on the positives in my life no matter how small I think they are, is a great way to stop the darkness from swallowing me whole. There is always a light at the end of the tunnel, whether or not you can see at this moment. It is there and its worth the battle to reach it, trust me. All those nasty things you keep telling yourself, would you say the same about your best pal? No, because they deserve love, kindness and forgiveness. As do you. Please be kinder to yourself. In every sense. Be kinder to your mind. Be kinder to your body. 

When I started raising awareness and talking openly about my health, I didn’t ever anticipate the positive affects it would have on the lives of others. Primarily I wanted to help EB sufferers with isolation, endless questions and possibly a cure in the future. But it has become about so much more. All I've ever wanted to do is help others and now I’ve been given this amazing platform to do exactly that. Its not always easy for me to be so open and honest online and in real life but I spent so many years silenced by embarrassment and guilt. I didn’t think I could talk about what was going on in my head. I didn’t think anyone would want to listen. However, once I started opening up I realised how many people cared and were interested in what I had to say. I  realised that not bottling things up, in itself, made me feel better. I realised I was not alone with my thoughts. Don’t know if anyone in your life will listen or understand? Believe me, there are people who want to hear it all. There are people who want to help, you just have to give them the chance.

This Christmas the message I want to give to you all is a reminder that your voice is important and valued. Never shy away from voicing your opinions or feelings. They are valid. You are valid. Although this is the ‘season to be jolly’ remember its okay to have dark days and you shouldn’t be ashamed of your feelings, whatever they may be. Unfortunately Christmas doesn’t magically get rid of the negative thoughts in your head but if you’re struggling this Christmas, take a step back and breathe. Try and appreciate the little things around you, be thankful for the people in your life. And be damn proud of yourself because you’re still here and you are kicking ass. 

 

Final Image by Rosie Foster Photography

Dec 05, 2018

I love your writing! Thank you for your bravery and for your honesty! You’ve helped so many with EB by being so open and honest! Thank you.

Maureen B
Dec 05, 2018

My amazing beautiful granddaughter Maya, love you so much.💜💛💚💙xxx

Jean Spencer

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