Saturday, May 14, 2016

Invisible illnesses?

So..... first blog post in a while. Not the first time I've written that sentence. I'll get around to filling in the blanks, but for now I'm going to focus on the reason I started this blog (before the universe decided to try to prove I may have been a psychotic serial killer in a past life.  Hell, maybe I have a dozen past lives and I was a psychotic serial killer in them all...)  For now though, exhibit one:  LYME DISEASE.

As the name of my blog suggest, I did indeed start writing a personal blog with the intention of focusing lots on Lyme disease information and awareness.  And for anyone who has missed my Facebook or Instagram posting, or indeed the (wonderful) increased media coverage, May is global Lyme Disease awareness month.  I'll just stress that point:


Just to be clear. And I will get to that.  This may be my first post in a while, but if there is anything that I will battle my stressed, fatigued, and pain-addled brain to write about, it's Lyme disease awareness. (Yeah, 2016... not off to a good start.  A story for another day.)  There is LOTS going on in the world of Lyme disease this May. That means lots to talk about.

Today, I want to focus on something that began my own journey into the world of Lyme disease - my initial (mis)diagnosis of chronic fatigue syndrome.  You can read more about that in this post here: But you don't look sick or by reading My Lyme Story at the top of the page (part 2, well overdue).  

This past Thursday (12th May) was CFS/ME AWARENESS DAY (& now Fibromyalgia is included - there are so many similarities; cross diagnoses).

One key similarity is all 'diagnoses' fall into the category of invisible illnesses.  We are not obviously marked by what is wrong with us; and in many cases, our illnesses are not constant.  We have good days and bad days and sometimes, it is as confusing to us as to anyone else.  

Depression...... & all other 'invisible' illnesses

Except we can feel it.  And on the bad days, staring into a mirror with heavy eyes, grey skin and a strong idea of what we might look like when we are 90 (if we make it that long), it is like a stranger staring back at us.  We do not recognise that face in the mirror.  But we know we hate it.

 Norwegian CFS awareness group - Facebook page: 'Creating my Freedom: ME'd' created a wonderful short film for increasing awareness of CFS/ ME.  They use images of sufferers on good days and bad days, positioned side by side, showing that, in fact, maybe this 'invisible illness' is not quite as invisible as it seems.  People respond well to visual information.  For the most part, we understand the world by what we can see.  This is a powerful visual representation of how we present ourselves to the world, versus how we look on our bad days.

Please watch this short film, made by Josephine Rausand (from their Facebook page Creating my Freedom).  The only way I seem to be able to share the video is my OWN FACEBOOK POST - please click to view.  I will add a video if one becomes available.   

Here are a selection of stills from the video (but please, take the <4minutes to watch; the stills do not do the video justice:

The comparisons show that 'invisible' illnesses are not really invisible; they appear invisible because we hide away. 

We hide away our weakest, most vulnerable view of ourselves. That person who stares back from the mirror bearing only a slight resemblance to the image in our heads. We do not hide away out of a vanity, or anything close. There is a need to shut the world out to protect ourselves; an instinct to cocoon ourselves, as sick animals do; it is a way to survive when we see no other way, and we have no medical support. It is self-preservation at its most raw. 

This shows it is not invisible. The few people who ever see us on our bad days are horrified,  shocked, surprised - usually they see us with our masks on.

And I am no exception. I hate having my photograph taken when I 'look ill' - but I have taken a few deliberately, planning to write something like this at some point..... 

Invisible illness?

Hopefully the reach of social media can help dispel the myth of invisible illness and increase understanding. It is not truly invisible, but sometimes, as with most severe illnesses, bed and rest are not even options, they are essential - what has been labelled invisible is more accurately described as hidden

"Learn from yesterday, live for today, hope for tomorrow." 

 - Einstein -