Sometimes, writing is hard, not because of the subject, but because you know before the words are on the page, the reactions that they will bring. Ask anyone who has lived with any chronic illness for several years and they will know exactly, what I am talking about. People look at us and listen to us, in a completely different way than they do to those who are healthy. They make assumptions about us, from the moment they know we are ill, they are waiting every second of every day, to be able to tick off their list of boxes, and to condemn us. Their preconceptions of what lies ahead of us always include one thing, depression. Well, I hate to be the one to burst the mythical bubble, but most of us don’t get instantly depressed and many of us, don’t get depressed at all, so stop waiting and please stop trying to put conditions on us, that we really don’t need.

It is those assumptions, that lead far too many of us, to simply not tell our work colleges and sometimes even our friends and family, that there is anything wrong with us at all. I fully understand this way of handling things, even though, I did the complete opposite. I chose to put myself under the magnifying glass, because just as with my writing, I believed that telling the full truth to all those around me, was the right thing to do. No, I didn’t force it down people’s throats, but I was upfront and honest with my staff, knowing they would tell the rest of the company. I wanted them to see that a normal life could be lived, despite your body falling apart, and I honestly believe it was and is the right thing to do. As far as I can see, the only way, that we can gain the understanding I hear so many looking for is to be upfront and to tell the truth. The more of us who do, the more the word will spread and the more understanding we will receive, hopefully, even in the distant future, we might even find it in complete strangers.

No one should feel that they have to live a lie, that they have to keep secrets, because of others and what they might say and do. We shouldn’t have to fear being treated like lepers, nor to be made to feel like a performing bear, we should be treated just as everyone else, but with care and understanding when we need it. Nor do we need wrapping in cotton wool as I promise, we don’t shatter if you actually speak about the reality of our condition with us. Those of us who are dying, know so, but remember, so are you. Granted, we will probably get there long before you, but dying isn’t the worst thing in the world, trust me, being treated like an alien race is far worse. We are still the people we were pre-diagnosis, nothing has changed, other than we now have a name for the monster who is living inside us. We should be able to carry on with our lives, just as we were doing before. We don’t want to be looked at as though we have a noose hanging over our heads, we can’t see it and neither should anyone else.

The beauty of being up front, of telling everyone at the same time, is I got rid of all the pitying looks, all the “I’m so sorrys” in just a couple of days. One month later, they had stopped holding doors for me and didn’t look jumpy when I passed their desks with a slight wobble. My attitude shaped theirs and work became a place where I was me again. I can’t say the same for strangers, I wish I could. There is an odd attitude in the outside world, one that says, until you have a walking stick or wheelchair, you’re not really ill. Up to that point, you’re a slacker, a fake, someone who just wants, without reason. Those assumptions grow and grow until we reach the giddy point where we’re accused of taking money from the state, so we can sit around doing nothing. Trust me, there isn’t one of us who wouldn’t rather have a normal life, where we have to earn our money, but many of us don’t have a choice.

Assumptions are painful, they make our lives harder than they need to be. I still remember the looks I got when I was able to leave my home, and venture into the city in my wheelchair. I used to go into town every Saturdays when I first got my wheels. I told Adam that I stopped going because the city center wasn’t as accessible as they say it is. It wasn’t just that, as bad as it was, there was one other thing that stopped me going, the looks. I could read their sneers, I could see the questions. “How could someone in a wheelchair, have that much money to spend on clothing and food?” I knew, because, the more bags of shopping I acquired, the worse the looks got. I was still working, I had as much right to spend my money on what I wanted as anyone else. I also heard the “tut’s” and the “sigh’s”, when they came face to face with me, blocking their way down the aisle with my chair. Not only where many shopping aisles too narrow, so were the minds of those I met in them. So if you’ve ever wondered why so few people in wheelchairs are seen in the city, well there is your answer, we’re not made welcome.

I don’t think it is too much to ask for people to treat us just as they do everyone else, but for some reason, it seems that it is. We’re humans, we’re not made of glass, we do have eyes and ears, and a brain, and we don’t want to be pitied. We know all about our reality and our futures and we would rather talk about it as it is, than being told to have a positive attitude about what are anything but positive facts. That’s the one thing attitude never changes, facts are facts. You can’t wrap them up in bows and whistles, or pretend they aren’t there, and if anything is going to push us into depression, it’s all of this that I have just written about. Our conditions are often really hard for us to handle, but we do our best to get on with life, is it really too much to ask for everyone else, to just let us and do so without making it any tougher than it already is.

Please read my blog from 2 years ago today – 27/08/2014 – Time for action

I have a new hole in the roof of my mouth, the scab left painfully and suddenly when I was eating my lunch yesterday. It felt so big that I have to get a mirror and take a look and I was shocked, it is about the size of 5 pence piece and slightly deeper, I am sure it will in time fill in, but whatever is happening in my mouth just now, it sure knows how to leave its mark. In my entire life, I can only……