Saturday, 13 September 2014

Invisible illness week

Unfortunately I've not been able to prepare a dedicated post to mark invisible illness awareness week, which  was this week 8th-14th September. I've been trying my best to finish other posts that I'd been working on for weeks and feeling really rough, with 3 days of being bed bound. However what I can do is to use this week as a jumpstart. 
For a while now I have been thinking about the reasons I started this blog, one of which was to raise more awareness and to let more people know about an illness that they'd perhaps never heard of before. Mainly because there is not a lot of help out there and a true life account is the most honest way to share what it's really like to be chronically ill. Being told that you have a condition that you have never even heard of is frightening. You would think that an illness that can be so disabling would be more common knowledge but sadly there is a lot of misconceptions and untruths in what little understanding there is. So I wanted to share the truth and perhaps create a little corner of the internet that could help other sufferers, new sufferers and friends and family of sufferers to help nurture understanding.
With this in mind I have been wanting to branch out a bit (there will be a lot of branching going on hopefully in posts to come) by featuring lots of other chronic illnesses that a lot of people have never heard about. What I want to do is to educate myself and others about more invisible illnesses and share them on my blog. To try and raise more awareness.
I already have a few in mind. Some of which I have experience of and I will be doing more mental health posts. However, I would like your input. Do any of you suffer from a chronic illness other than M.E or Fibromyalgia? Would you be willing to share a little of your story and information to help educate others? Even links to charities, organizations, blog posts and articles you have found helpful would be much appreciated. You will be credited of course unless you want to remain annonymous. Your help will be gratefully received. Please contact me in the comments or through gmail. If we can raise more awareness and educate people then all the better.
Lastly I created the photo at the top of this page after seeing a similar post that my friend Olivia did. These photos were taken on the same night. Now looking at the photo on the left if people didn't know better they would assume I was healthy but the truth was I was only out of my chair for 2 minutes to take the photo. Even the photograph in the wheelchair does not portray the whole picture. It says I have a disability but does not portray the days of being bed bound, needing care every day and the lack of independence. In both photos I'm the same level of ill but who would guess? The point is we never know the full story and therefore shouldn't judge. Many of us are fighting silent battles behind closed doors. But when we do go out we crave that little bit of normality that we don't get to experience often.
I have wrote other posts on invisible illness and M.E before so please do have a read of them too.

In my 2013 post I say that the best way to educate and spread awareness that is truthful is to read the blog posts of sufferers. Below are links to some of the blogs I read regularly, all written by some very lovely people that are doing a sterling job at raising awareness through their bravery. As you can see there's a fair few. All ladies though, I need to discover some male bloggers. Come on fella's.
All About ME by Alison
Meg Says by Meg
M.E and Me by Chloe
Katherine and ME by Katherine
Smell the Roses by Rachel
Spoonie Sophia by Sophia
Smoothie Spoonie by Lennae

1 comment:

  1. Nice job Sian! Thank you for mentioning me on your reading list, I love reading your blog too, you do a great job of promoting ME/CFS!

    Lennae xxx