The Sick Role

I know I've rather slowed down with the writing. I always have plenty to say but sometimes I need to keep things to myself a bit. However I do realise that not writing means that you guys miss out on all my wonderfully happy stories! So I thought I would top you up with the joys of my life and all the little challenges it brings. Today I'm merely ranting out loud but I promise to post a more personal blog soon....

I've been thinking a lot lately about other peoples perception of what my life entails. Obviously not those who actually take the time to find out, those who send me messages because they've not heard from me in a while...you guys are fine! No, I'm talking about those who choose to judge from a thousand paces purely on the fact that you have put a little make-up on!

Just want to get this out there... YOU GUYS SUCK! Big time!

What is it with this obsession that sick people must be:

a) miserable   (sick people obviously NEVER smile)
b) pale   (anything warmer than casper the ghost and your obviously fit and healthy)
c) unable to walk (omg...your not chained to the house?)
d) Totally useless (what, you can still do that...really?)

Just a few of my personal favourites but you get the idea. Well, maybe when you have flu, you behave like that for a couple of weeks. Take a day or so off work and hide under the duvet and it works for you, right? Yeah...

Now relate that to my life...

a) Do I want to spend the rest of my LIFE being miserable?
b) Do I want everyone I meet to tell me I look like Morticia Adams?
c) Do I want to live my life, or rot my brain on day time TV?
d) Everyone needs a purpose!

I don't want to spend my life hiding away in a duvet fort, looking like shit, crying all day feeling sorry for myself because I'm so useless. Maybe you like to do that when your sick for a day or two but if that was forever...would that still be your strategy?

Of course not!

So why judge me negatively for trying to do as much as I'm able, smile as much as I can and try even though I might fail. It's my choice to fight back, whether you like it or not. Simply because I choose not to let it beat me does not mean that I am well. I merely choose not to share my pain with people who will never understand....life's too short!






Comments

  1. The Myasthenia Kid28 August 2015 at 04:26

    That is so true hun. People expect you to act in a certain way and if they see you enjoying yourself for an hour they forget the other 23 that day that you felt like shit and assume you aren't as ill as you say you are.

    It annoys me so much that people are so easy to judge without even understanding what is wrong.

    Much love
    Rach xx

    ReplyDelete
  2. Unknown25 July 2019 at 19:36

    I’ve just found your writings and I’m just beside myself at the similarities!!! I’ve gotten a lot of validation from reading these and I’m ready to renew my fight to find someone, anyone who might can help me. And just in time too, I was bottoming out in the hope department. Thank you so much for this. I knew I wasn’t crazy.

    ReplyDelete

Post a Comment

Hi please post comments below, I love to hear from my readers so don't be shy X

Popular posts from this blog

Gastroparesis, EDS & the Final Piece of the Jigsaw Part #3 / Cranio-cervical Instability!

Image
I know I left Part 2 somewhat in the middle of the consultation, so I'll try and start where I left off and see where it goes. Obviously there are inevitably going to be more "parts" to this series the deeper we go, so bear with me I WILL get it all down on here eventually. To sum up the last post in a few words, the diagnostic term for my neck issues is, Cranio-Cervical Instability. Naturally our next question was, "What can we do about it and what does it mean for the future?" This is where I struggle to explain. When it comes to brain/spinal surgery the decision process is not so cut and dry! So, the only way to actually fix the instability in my head and neck and prevent any further neurological damage would be to fuse my skull and top two vertebrae together using metal rods (permanently immobilising my skull C1 & C2) and remove the excess tissue that is causing the brainstem compression. Obviously this is a very risky procedure and not one...
Read more

Gastroparesis the Truth

What is it really like to live with a  debilitating condition that may never go away? In the beginning, its all about survival, just trying to get through the endless testing, trying to find the answer to your problems. It is such a difficult time that you barely notice the months slipping by that you will never get back. You spend most of your time trying to find a treatment that will help, looking for that illusive piece of the jigsaw that has been missing your entire life. You don't stop to think, what if? It doesn't even register on the radar…there must be something, someone else might know more, maybe I can work it out myself?  So you loose yourself in finding the answer, switch off from what's happening and focus on the one shred of hope that you have. All the time, tick tock, tick tock, the months go by. Finally you find someone who cares, a special dr or nurse who takes the time to listen and it changes everything….for a while. It gives you comfort, new...
Read more

Gastroparesis, EDS, & the final piece of the jigsaw #Part 2

Image
Click here for #Part 1 Most of you will already know through my blog, I'm not keen on surgeons ( to put it mildly ) so that key moment when I first meet a new one always feels like a very tense and anxious exchange. Years of plodding through the various health systems has unfortunately made me very cynical so it takes a lot to win me over these days. ... However,  Dr G had a very open and friendly manner about him which was instantly reassuring, we felt like equals from the offset so any tension we had felt beforehand quickly disappeared. He managed to hit my top two priorities on the head in pretty much the first sentence! He explained that he had been very interested in my unusual presentation and was keen to understand more , which is always difficult through email conversation. (not exactly a demanding list but surprisingly hard to find, especially among the surgical fraternity!) Prior to the appointment I had submitted a series of questionnaires including; a CCI quest...
Read more