I started about an hour ago writing a post about something that I thought was a subject that I had a lot to say about, the attitudes of others towards people who are chronically ill, I just deleted the whole thing. What I was writing wasn’t going to be helpful to anyone, what it was, was quite simply me writing about a collection of individuals who no matter how much I wrote, or how deeply I wished might learn and change, probably won’t. It was yesterday’s post that gave me the idea, when I said that I recommended a wheelchair for those with a stutter as it made my life easier, well it gave me this idea that I could relate all the odd, painful and downright nasty stories and some might just think twice. I had written about two paragraphs when it clicked, people like that don’t read blogs like this, the people who read blogs like this, are those who already care. When I started out on Twitter I had a few grand ideas of what I wanted to achieve, firstly raising the profile of the chronically ill, putting us out there as everyday people with lives to live, regardless of our actual condition as that is what we are everyday people with everyday lives. I wanted to break down the individual conditions and bring together those with a huge range of conditions as I had realised we all share so many symptoms and problems, you don’t have to be identical to support each other and the bigger the numbers the more possibilities. It is easy to feel isolated by a condition that is rare, or has something about it that put’s people off being in contact with others. I may have MS, but my form is PRMS, rare and difficult to find others with or who understand what it does, but if I ignore that and simply say I have a chronic illness, well suddenly millions understand and many will have some symptoms identical to those I live with. All too often in life it is the label that makes it hard to move on, rather than the components that make it up. I may have destroyed today’s original post, but I am still left with the problem I started with, how do we change those who might not care at all, to people who at the least understand enough and might just find a touch of compassion somewhere inside them?
Recently someone asked me why I didn’t have more humour in my blog as they found it too depressing and painful to read. The answer was easy, I write about reality, when funny things happen then I write them, when they don’t, I write the rest. I realised later that I had used a word that thanks to TV has been distorted beyond anything I recognise from my own life, reality. Thanks to programmes like “Big Brother”, “The Osbournes” and all the others they spawned, reality is no longer the everyday life of everyday people, it has to be filled with the ridiculous and the far-fetched. It is no wonder we have a generation of deluded adults in this world, as the everyday, is no longer the reality they seek. No TV channel is ever going to ask me to put camera’s in my house to watch me writing or sleeping and if they did, no one would watch it as my life is mundane and sometimes painful. I know that the biggest challenge I take on daily, when I start to write, is the fact that each post is just a glimpse, one subject or one day in my life. Someone dipping in and not knowing all, that I have said before, could get a very warped view of my daily reality. All too often I find myself wanting to add in things that I have already written about in the past, just to give a fuller picture, I suppose that is the biggest difference between writing a book and writing a blog, I don’t have the luxury of my readers knowing my history in full.
Chronic illness isn’t just a day or a one liner on Twitter, it is an entire life. How we deal with its impact on ourselves and on others all depends on who we are as individuals. It isn’t just the condition, the individual symptoms and how they affect us, it is us from birth to this very day, a blog is nothing more than a series of glimpses, even if those glimpses are available daily. I know I have a talent for being able to put into words it’s true impact, which to me I find ironic as I have often wondered if it was the way I described things that led to it taking nearly 20 years for them to diagnose. I know I can open the eyes of those who don’t understand what their friend, daughter, son or partner are going through and even why they might react in a certain way, but no matter how well I do any of it, the real truth about any illness is it’s personal and no one but the person who is living with it, can truly stand in their footprint.
Every symptom I have, is changed by who I am, if it were possible for us to both be given the identical pain in the exact same place, we would undoubtedly describe it in a different way. The differences we would note I know without a doubt is caused by what we have known in the past as I said, personal. How I can do what I set out to do when I started on Twitter is still evading me, I hope that it is just a case of keeping chipping away and hoping that the number will keep rising and my tweets are spread and read by more people and they keep coming here and reading not just one post, but as many as they have time to. My illness may not be identical to what they will see in others, but it is close enough for them to develop an understanding of life in my footprints.
Please read my blog from 2 years ago today – 11/01/13 – Peaceful acceptance
I don’t know if there is a sleep specialist reading this or if any of you have the answer to something that I am find more than just a little ODD. This isn’t the first time that this has happened but………
I too often despair of all the nonsense reality TV, think people have dumbed down and worse. I do a fair bit of disability and political activism, when I feel able, in fact becoming disabled and or chronically ill, has spurred me on to it, coupled with the environment in this country in recent years. It’s sad that people don’t get what you do and even say it’s too depressing and or dreary/mundane. But, as I’ve learnt, you can’t please all people and you can’t get through to them, get them to look at things differently, I suppos they’re not or ever will be open to change? I’m saying this partly as a reminder to myself, as I feel I often get too wrapped up in agonising about what other people are like, so thanks for that!
I want to say again, thank you for what you do every day. I don’t know what the figures are, but am pretty sure there are lots of people here, and in other countries who love to read your blog and get so much from it. We all have our own things, differences etc., but we all share much too.
How strange. I do not find your blog depressing at all. If anything, I would say it is life affirming and uplifting. And you do include some humour in your posts. What do they want – a Disneyfied version of your life ? Perhaps a few songs and dance routines thrown in too for good measure…? As Marion says, you can’t please all the people all the time. Just keep on doing what you are doing. It’s great :yes: x
You are an encouraging person with an amazing outlook on life!
You are going through something that I myself can try to imagine, because some individuals in my family have special needs of varying degrees, and/or mental illness. Your story has a hold on my heart. I am looking forward to your next posting, because I really feel like I know you.
I hope you have room for another friend :). Prayers and many blessing to you. I agree with Keggy, you are not at all depressing. You are a very inspiring person! Never forget that.