When living with a chronic illness, in many ways our identities feel taken from us. Whether you live with one illness, or twenty, you are mildly or severely affected, a bit of who we are is striped from us and replaced with the longing ache of who were once were, the person we wish we were.
No matter how much we cling onto the person we were prior to the dreadful diagnosis, sometimes when we look at ourselves in the mirror, we won’t always recognise the person before us. We change in so many ways, although not all bad as being ill can develop us in ways we don’t even realise.
Theft of identity while living with any illness is often predictable, one of the biggest aspects of being newly diagnosed. We’ve all been there, yet not all of us regain the control we need, the control we want.
It is truly devastating to be suddenly restricted by the name of an illness you can’t even pronounce and have no say on the changes being made to your lifestyle and you as a person. We learn to change how we do things, our hobbies and the things we once truly loved. Living in the word of doctors appointments and flare ups mean we have to make tough decisions and these decisions can be just as troublesome to make as anything else.
I’ve had to stop doing so much: simple things from netball games, to walking with my friends into town without worrying about the journey back. Things closer to my heart such as horse riding and playing on the trampoline with my brother. Losing everything at once overwhelmed me with nothing but confusion and the fear of losing myself. I know I won’t ever be that person again, I will never live without pain nor will I ever be illness free. That’s the harsh reality.
I think the fear is being seen as your illness rather than the person the illness has swallowed. I used to and still do fear I am seen as the girl in the wheelchair, rather the girl with the great sense of humour. The girl who was too young to be ill, rather than the girl who loved to paint. I fear I am seen as Myalgic Encephalomyelitis rather than Maddie. Seen as POTS and EDS rather than who I really am. Not only did I fear that others would see nothing but the illness, I felt like I had lost a great part of who I was.
I think the trick is to understand that you can be both the new and the old you. Let the girl with the chronic illness stand out as much as the old did and don’t for one second let it define who you really are. I think we should embrace both the old and the new, after all an illness shouldn’t stop us from being who we are at heart but we should allow it to build our character. It took me a while to understand that although I had changed drastically, I am still myself. I have learnt to appreciate and accept that although I am not 100% who I was, I am now more capable of understanding others needs, I love harder than ever and I appreciate every single thing I have and am able to do. Yet I am still as interested in music, art, I still love animals and reading and I’m still as quirky, sarcastic and smart as I have ever been.
I am not the sick girl. I am the happy, nerdy, quirky, horse loving, arty mess of a girl who just happens to be sick.