Don't Ask If You Don't Want To Know
We live in a rabidly changing world. One where many people encourage each other to talk 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 you 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. Being asked about my day and my disease doesn't mean I will pipe in with a positive out look on my situation. Life with invisible illness and disease if full of raw mortal moments.
I do not share or talk about every test or biopsy I have ever had done. I do not inform you everytime 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 rememeber.
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, somedays 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 am sick of hearing, "deal with it," "you should just accept that you are sick," 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 "accept" anything. I have dealt with the grieving process seven times and now may have to deal with it an eighth time.
I paint up my face and clench my jaw to breathe through the pain. This doesn't mean I am better.
Please don't tell me to stop complaining. I do not believe that that word even fits my situation. I may live with various diseases and conditions that you do not understand. So if you don't understand what I have you really have no right to tell me that I am complaining. If you are tired of listening to my journey stop asking. Stop reading my blog post. Life is to short to have unsupportive, judgemental people in my life.
Something that I have felt more so recently especially with some friends and people I know is the constant comments for me to get better soon. Numerous times I have explained I will not get better soon I will not get better. I will get worse. Living with perniosis, Raynaud's disease, my cell disease, either demo syndrome, and postural orthostatic tachycardia is not only not well known they are pushed aside in a sentence. Because people don't understand what I'm living with they tend to assume that it'll just go away. Or that I'll just have better days all of the time.
I may be able to swallow my pain it or hide it well I'm around people that does not mean that I'm better. It's a weird coping mechanism of mine to not show how much pain I'm in and out mono grown when I am in pain. Because I have had people tell me that I'm complaining that it's not that bad, that I'm too young, that I don't understand the pain is, that I don't know how bad it is to be old.
I may be young but the stuff that I live with is extremely painful it has stop me from being able to do things I want to do. Not because mentally I'm not prepared it is because physically I end up having an allergic reaction to something out of nowhere. My POTS acts up and I end up with a random dislocation of something. I'm not saying any of this out of fear I'm saying this out of fact as this is happened to me numerous times in the past. Some people say they understand and others don't. That is just the way that it is. So please don't tell me to stop complaining about my situation when you're not living it. You may see me for an hour or two or perhaps a few more but I am really unwell. I know sickness makes a lot of people uncomfortable.
I want the best of both worlds, illness has changed my life in drastic ways. I have lost friends from talking about my illness. I now want to just have those close to me that love me and support me in my sickest moments. For in those sickest moments, a true friend would want to be with you.
Thank you for reading. My name is Anna Werrun, I am a zebra. I do exist. Warm thoughts be with you all this fall. From your friend who dislocates daily.
Anna's Instagram: @anna_eds
Anna's blog: annawerrunblog