Sunday, 18 May 2014

Am I invisible?

Photo source, pinterest

As the blog is now a year old I want to reflect on some of the reasons why I started this blog and what I've gained from it in the past year. I started this blog at a time when my illness was becoming more severe. A time when I was very scared to be honest. I didn't really know where to turn. Yes, my doctor could send me for more blood tests and try and rule out anything else. Check for signs of muscle wastage etc. Anything 'more serious' as they like to term it. Well to me it was serious. I was loosing more and more strength in my legs and the length that I could walk for was decreasing rapidly. I was needing to use the surgeries wheelchair to get into the doctors. Of course I already knew I was sick and had my life turned upside down because of it. Unable to work, only being able to do things on good days and then paying for it in increased fatigue for days if not weeks after. However I was now facing losing even more. My legs were literally being taken from under me.

When I was first diagnosed I knew of a local support group and had attempted to join in some of their gathering but was simply unable too. It seems somewhat redundant to have a support group when the very illness that the support group is for stops you from attending. I'd also attended M.E clinic but since being discharged it felt as though I was left out in the wilderness and as I explained in my year in review post I had gained no insight there that the illness could do this. The world felt like a lonely and scary place. 

Around this time I was reading a book by Ali Harris called 'The First Last Kiss' in which a young woman starts a blog to help her to deal with her life being turned upside down. I won't give away details, you know I hate a blurb, and also because I don't want to spoil it if you haven't read it, which I recommend that you do. Before hand I knew a little about blogging and it was something that I would have attempted as part of my journal work for my masters degree but I had associated it with people that had stories to tell, tales from their busy and exciting lives. Neither of which I had at that point. So what would I even write about? Who would want to read about how I spent 18 hours asleep had some painkillers then went back to sleep. But after reading this book it made me think that maybe I did have a story to tell. In the trailer for the Canary in a Coalmine project there is a woman filming herself shaking uncontrollably due to building noise and she says to the camera "I think someone needs to see this". And that resonated with me so much in deciding to write this blog. Much like in the book I wanted to share the nitty gritty details, the things no doctor could tell you. The things people could do with knowing in a way. It felt like the only way that people would know the truth about the illness.

On top of this, I had always found writing to be a good form of therapy. To get my feelings down on paper and out of my system as it were. I'd always found this cathartic. So if no one else read the blog then  it didn't matter as it was just as important for me. To help me cope with the changes that were hapenning in a positive and constructive way.

So as my illness became more visible to the public on the ocassions I could leave the house and more sick person paraphaneilia started to appear around me the more visible I decided to make the profile of this illness. I said from the beginning that if I could educate just one person about M.E then I would feel humbled. In the past year of writing this blog I'd like to believe I have educated a few more. It's always great to get a comment from someone saying that they had never even heard of it and now thanks to me sharing my experiences they do. If more people could recognise an M.E sufferer if they saw one then that would be great for awareness. I don't think someone who see's me in my chair automatically thinks "oh, there's someone that suffers from M.E." More than likely they would look at how old I appear to be and think "I wonder what she did." When I can get out, sometimes I like to dress up a bit more or put on more make up than I used to which I think further adds to the public's confusion. There's no obvious plaster cast or pregnancy bump or a headscarf covering up a bald head to give them a clue as to why I'm in a wheelchair. If someone saw a photo of you with a feeding tube (not that I have one but I know sufferers that have) they would probably think it was due to a digestive disorder. Not that you physically do not have the energy to chew. If someone saw someone with sunglasses on, on an overcast day they would probably think that you're wierd or trying to channel a celeb,not that even the minimal daylight is too bright for you to process and trigger migraines. More on the publics perceptions soon (well hopefully soon.)
Most would probably say they'd never even have heard of M.E. Or at least not known the full effects of it. I had only ever known it was a medical condition but no details about it.

And so I decided to step out of the invisibility cloak. To reach out and find other sufferers that were also in hiding. At first I didn't know just how much of an online community there was. I had read a few blogs but they seemed to peter out once they'd recoveted somewhat. As I began to share my blog the more I discovered that there were many more sufferers in exactly the same situations. Plenty more people brave enough to share their stories. And so the world became smaller again, less lonely. If I wanted to talk about my illness all I had to do was go online and there were people who understood. If I felt cut off from the world then I could find friendship online. That has been one of the greatest gifts from blogging. In a way it's given me a social life again but one that I can manage. One where I can just be completely myself and not doctor my illness so that it is more publically acceptable. Of course I'm not saying that   having 'normal' friendships and social interactions should be replaced by this. They are still very important. But it is nice to have a shared understanding that no one else can. 

So am I really suffering from an invisible illness now? I'm talking about it more now to help raise awareness and of course with the wheelchair etc people know something is wrong. But like I said unless they knew me well they'd probably never think it was M.E. The only way I'd say that my illness is currently invisible is due to the more bedbound and housebound times. No one sees the really bad days apart from my family who I rely on as my carers. And recently that changed a little when I decided to post a photo and a description of my symptoms the day after M.E awareness day when I suffered from really bad Post exertion malaise. I know some people will have just ignored it, just scrolled through to a more intetesting status. I know some people will think that I was attention seeking or wanting sympathy. But there were others that took time to read it. People that I thought may comment or be in contact didn't but on the other hand some I never expected left lovely comments. I wasn't asking for sympathy or attention it was my way of fighting. Those that know me well know that I'm pretty determined and although my cause has changed and I have limited energy to use I'm still determined. Those photos and all my statuses or tweets about M.E are my way of saying "oi listen and take notice of this illness!" My way of doing what I can to help our cause. Like I said earlier as long as I'm helping to raise awareness too then I'm very grateful.

This is a topic that I could write so much about and I will write more on other  posts. It's long overdue that this illness was made more visible. It's by making this illness more visible in what little ways we can that will get this illness noticed. It's not until this illness is noticed that we may be taken seriously. The government may give us more funding and funding to find a treatment that will be effective not just for more psychological treatments that make no inroads what so ever. To make sure that clinical services are offering equal programmes across the country not a postcode lottery depending on what healthcare professionals are interested in M.E in your area. Making this illness visible is our biggest fight at the moment and one all us bloggers and advocates are trying our best to change. If awareness week taught us anything, it's that there are many many sufferers desperate to be heard.  However being ill there's only so much we can do. We're the only ones that know what it's really like but we need someone healthy to champion our cause. To put in the muscle and energy that we can't to make this illness more visible. 

Sian
X

10 comments:

  1. Great blog, as usual!
    Long live Twitter so I can keep in touch with people and don't feel quite so invisible.

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    1. Thanks Greg. Yes Twitter has definitely been worth getting. A few odd balls on there though... (aren't we all?)

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  2. Echo Greg
    Ana xxx

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  3. A fantastic post Sian, so brilliantly written
    Faye x

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    1. Thank you Faye. Looking forward to checking out your blog too. X

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  4. You've put into words all that I feel. I've said before that no illness is completley invisible, people just have to look hard enough, but you're right, it's just invisible when we are hidden away in bed or stuck indoors. Excellent post Sian! Xx Hayely-Eszti

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    1. More out of sight out of mind maybe? Thanks to the revolutionary make up industry for our masks. Although putting on your face often makes you too exhausted to even leave the house. Do you look at the world completely differently now? I see far more people with wheelchairs or walking aids. Whether it's because I'm more intuned to that now I don't know. Just echoing the great work you did with your photos. I think it confuses people even more when you look fab and in a chair haha. Got a few looks when I went to the theatre. X

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  5. Love to you Sian, you have struck a chord with me as a fellow fibro/ME etc fighter. I'm adding you to my RSS feed. Cath x

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    1. Apologies for the late reply. Thank you for the add and your comment. Hope you are doing okay after Christmas break and ME/ fibro not being too cruel.
      Sian x

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