Warning this could get a bit ranty!
I am not an angry person. I am actually quite a forgiving person until you push me to the point of no return. It takes quite a lot for someone to push my buttons enough to get there but once they do they are left out in the cold forever.
What makes me so very angry at the moment is people who ask how I am or how my last doctors appointment went and either a) as you tell them their eyes glaze over and you can tell they can’t wait for the conversation to end, b) by the questions they ask or the facial expression they display shows their complete disbelief in what you are telling them or c) ignore completely what you have just said and turn the conversation back on themselves – their favourite topic of conversation.
I wonder if its my fault that my answers are greeted with these responses. Like all people with a chronic illness or condition I am quite stoic. I try not to moan as I get bored with it also.
Is it because I don’t grimace with every move? Is it because I don’t make it the sole topic of every conversation I have? Or is it because when I am around others I will push myself beyond my limits only to collapse when they have gone? Is this why when I am having a rough time and can’t do the things I normally would that I am met with a complete lack of understanding?
I am in excruciating pain right now despite my arsenal of medications that are available to me. At present it is my back and left leg that is causing all this pain. My pain was under control until April this year and its slowly getting worse. You (the people I am talking about) don’t see the nights I am kept awake by pain. The days I have lost due to being confined to the sofa or my bed swathed in hot water bottles desperate to ease the agony and mess my back is.
Why do you constantly expect when you to talk to me for me to answer that I am ok / fine? Why ask if you dont care/believe or are bored by it all? Believe me I got bored of this shit years ago but I can’t lie when yet another diagnosis has been thrown my way. Despite your disbelief, lack of care of empathy my condition still exists. I am so sorry I don’t fit in with your preconceived ideas of chronic illness. This is what makes me so very angry.
I am angry that despite me getting a diagnosis from a neurosurgeon that I have spinal arthritis and there is nothing they can do. The bones are crumbling away, I am 40 years old and I am screwed. I am sorry that you don’t get that the doctor also believes I have a nerve root compression that has left my leg numb in places and in excruciating pain in others. I am angry that despite me telling you this you don’t actually care and I am beginning to wonder what actual purpose you serve in my life other than being completely unsupportive.
I am angry that because you can’t “see” my disability and that it conveniently gets forgotten. I don’t fit what with what you believe is disabled because I have all my limbs and I am not sat dribbling in the corner. Am I disbelieved because I try so very hard to fit in and be accepted. Just because I use a wheelchair / walking stick / crutches / frame does not mean I changed as a person or that my mental capacity has become so reduced i don’t see you for the completely shallow self absorbed person(s) that you are.
I am angry that due to this condition I get to see people at their very worst. I am angry that I am only contacted by you so that you have the latest gossip on me. When you relay it to your audience you can feign compassion and empathy so well but the truth is I won’t hear from you for months again unless something happens to me and you can use my misfortune to captivate your fans again. That makes me very angry and can you blame me?
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Sorry for the rant, this post was written on the day I had seen the neurosurgeon. Despite the fact it looks like I will have to have an operation for a nerve root decompression I am more distressed about the early onset arthritis in my facet joints. People were asking me how I was and this was the response I got from a small minority of people. It got me into rant mode, which I try not to do very often. As a result of a few peoples action I have decided to no longer post on my personal facebook account about my health and confine it to my The Myasthenia Kid page on facebook.
To soften the rant I have included the picture of Mollie below. Dogs dont judge they love you unconditionally.
Mollie showing me her tennis ball collection.