This is my way of taking ownership of my kidney disease.
‘Scrap the Mask’ is about living with Alport Syndrome, the adventure sports that keep me sane and connecting with others going through similar challenges.
Let’s face it, we’re all a bit crazy aren’t we?
Us humans… we wear masks every day to cover up the craziness. It’s what the hustle and bustle of the commercial world demands of us. Some masks are more disguising than others, and some people never take their mask off. We all have our own individual ways of portraying our best selves. We’re expected to be strong, focused and on top form all the time… it’s exhausting! As if that isn’t hard enough, we flippantly judge, analyse and scrutinise our colleagues based on who they are at work. For many people their work defines them and we can easily forget to consider who the people we spend most of our lives with really are.
I want this to be the place where I can scrap the mask, share my experiences and connect with others going through similar challenges in life. Living with a rare kidney disease can feel very isolating, not knowing anyone outside of my own family who might be dealing with something similar. I know there’s a fine line between complaining and sharing life’s challenges, but I want to express the importance of future research and support for renal patients. It’s too easy to feel bitter inside and resent people for not understanding, so if shouting about my battles can bring positivity to others, I guess that can only be a good thing?!
Alport Syndrome has left me emotionally paralysed on two occasions in the past.
I don’t categorise them as breakdowns, I prefer to call them ‘wobblies’, because I managed to avoid taking medication to fix myself… which I am by no means against by the way, I’m an advocate for taking medication if it prevents someone from losing their true identity!
I know exactly why my wobblies happened. I became lonely and stopped sharing the real me. I shut the door, bottled up my emotions and isolated myself. I put my mask on and refused to take it off because I thought it would make me weak. I’d convinced myself that I shouldn’t talk about my situation, and that no-one would understand anyway! But on both occasions, I eventually found the way out through staying active, finding positivity in my life and talking about the problems I’d created in my head, as well as the challenges to come.
In the last two years, I’ve been a lot more open about living with Alport Syndrome. I find talking about it really helps control the anxieties of kidney failure. However, there has to be a balance between speaking out about it and not letting it define who I am. I’ve never spoken to any of my employers about it before now. I’ve always believed that having a health issue isn’t good for business and it scared me into hiding and pretending nothing was wrong with me. If anyone asked why I’ve got hearing aids I would just say, “It runs in the family.” I’ve never liked shoving problems under the rug, but I thought it was inappropriate to talk about health related issues in the workplace. It used to make me feel vulnerable. I’ve learnt that I can be accepted for who I am, as long as I show willingness and work hard.
I want to reach out to anyone struggling with hearing loss, eyesight problems and kidney disease so that together we can prove that negativity will never get the better of us!
Let’s stay active, stay strong and most of all… stay resilient!