I thought for a long while after writing this blog if I should publish it. I think I need to for my own sanity at this point. I can be both negative and positive about my situation this is called being realistic and seeing all sides.
I must warn you I may sound crass and lacking couth I am being honest and transparent. Life is not something that comes with ease, it is a hard, raw process that shapes us into we are to become.
We live in a changing world. One where many people encourage each other to take about their struggles.
“Talk about it you will feel better.” Something many of us say to one another about our lives. By doing so someone shares something with in confidence. They tell you their desires, their hurts, perhaps they share their loss. However, so many are so quick to judge their friend or loved one by telling them to not complain.
You asked me to share, thus I am sharing. Don’t tell me I am complaining when I am sharing my story with you. I am being truthful, not sugar coating my diseases that could very well kill me. Being asked about my day and my disease doesn’t mean I will pipe in with a positive out look on a situation.
I do not share or talk about every test or biopsy I have ever had done. I do not inform you every time my condition changes to a worsened state. I greatly appreciate if you ask me to talk about what I am going through, please don’t use the word complain. Do not tell me I am complaining when I am reiterating the facts. You asked me about my story remember.
I am a chronic disease warrior I am constantly at battle with a body that is trying to destroy me from within. You can’t see the invisible battle, some days I can not hide my pain. On those days I fade into the background I remove myself from social media, and shut my mouth.
Not talking about my journey stunted my mental healing process. I am sick I will about what I am going through because it helps me. I am sick of hearing, “deal with it,” “you should just realize that you are sick and it’s never going away,” “don’t whine,” or my favourite, “it could be worse.”
Unless you have been diagnosed with seven conditions in an eight year span you can’t tell me to “except” anything. I have dealt with the grieving process seven times and now may have to deal with it an eighth time. I have excepted my diseases.
I may paint up my face and clench my jaw to breathe through the pain. This doesn’t mean I am better. I will never be better… This is a reality.
Please don’t tell me to stop complaining. If you are tired of listening to my journey stop asking. Stop reading my blog. Life is short I would prefer to not have people who do not support me, and judge me.
I am extremely sick, I am not saying this for attention. I am. Just because you can’t see it, you hear me talk of my journey dislocating, reacting, loosing consciousness doesn’t mean when I talk about my diseases that I am negative. It’s easy to tell someone how to be when you are not in their shoes. Please don’t tell me I am complaining. If you want to know me there is good and bad in my life. This is realistic. If you don’t want me to be honest with you don’t ask me how I am.
Thank you for reading my honest, blunt and true post from my perspective.
Fellow rare disease, invisible disease fighters this is for you. I truly understand why you stop talking about your journey. Please don’t, I love hearing others journeys. I know there are others like me out there.
You are truly never alone.
Your friend who dislocates daily.
I remain hopeful always.
Facebook link https://www.facebook.com/EDSVictoriaBC/
Personal Facebook link https://www.facebook.com/AnnaWerrun2/