Tonight I have written two word documents, one I wanted to use to gain awareness around different media outlets, and the second a blog post for #imnotdrunk.
I have decided to upload neither, I am angry because of what has been said and done to my family over the past few months, and the events of today. And of course my mother has been the voice of reason.
I have not deleted them and will finish them so they read in a polite manor and sound like they come from me not an angry person looking revenge, because sometimes that’s what I feel like I want.
It’s not easy constantly defending yourself and constantly answering questions you don’t always know the answer too, having someone go behind your back and never giving you a straight answer can be extremely frustrating.
I won’t tarnish the name I have built for myself on social media and in my local community because of something I write looking for revenge against one group of people in the war against Huntington’s. I have worked too hard and for too long to let one series of events and post affect that!
I started this blog because I wanted to tell people my story; I wanted people to understand what this disease is like and how hard it is not only being the patient but also the carer of someone at risk. When caring for someone with Huntington’s a lot of responsibility is put on your shoulders, and it can be difficult at any age, when you are younger it can be hard to understanding what is going on. You don’t always have the level of education others might have.
I have had many experiences with Huntington’s, these vary from amazing memories i will cherish of my father and events I have attended such as conferences, speaking events I will always remember such as the medical training day in Belfast and summer camps like the European one i attended in the summer of 2016. They’re not always positive; my struggle is how I can tell my story and experiences without coming across as slanderous, bitchy or even immature. I don’t want people to think I am another person using social media to bitch about how hard my life has been.
Revenge will not help my war I am fighting and I won’t let it destroy what I have worked towards, but I will figure out a way to tell this part of my story without coming across the wrong way.
I scroll through my Facebook, Instagram, Twitter and other social media outlets, their filled with stories about hardship and ill treatment of people. Well I would like the opportunity to tell mine; maybe someone will read my story instead of a video of a kitten fist punching their human! I feel like people need to know the negative and hard times, faced when you are a young carer, so many times we have seen stories of care assistants abusing patients in nursing homes, today Facebook is filled with a story about a poor girls who was rejected a smear test and then passed from cervical cancer, I would like to get the right person to listen to me, but who is that?
I will continue to think of ways to bring awareness to Huntington’s disease and ensure that no child has to go through what my brother and I have, it’s something I have said from day one.
I don’t hate Huntington’s, what is the point? It won’t cure it. It won’t make the disease leave my family or the family of people I now call dear friends alone, I do not like the situations you are put into because of the lack of awareness and help for those caring for and suffering from the disease. I do not think it is fair on those already going through a tough time.
Who will listen to me? Will you? Will my local counsellor? Or will Stephen Nolan?
If you can think of anyone who will listen to me, please send me a message.
Thanks again for reading, and remember this is my personal views.
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