Sometimes, it is good to stop, to take a little time to look at yourself, through the eyes of others. It is something I have tried to do throughout my life, but I think, I have reached the point, where I really have to stop doing it. It wouldn’t be a problem if the world understood what living with a chronic illness really means. Today is a perfect example. Today is pancake day, that means I have to spend a large part of it, making my Psyllium pancakes, essential to keeping my internal systems working. I have laid out before the work that it takes, the time that it takes and just how exhausting the whole process is to me. Trust me, this is probably the day in my current life, that has to be carried out frequently, that I hate. Through the eyes of others, it is one of those so what situations, yes, it takes a little time, and some work but anyone can do it, just get on with it. Through their eyes, I am just being lazy. That is the problem when you live with an invisible illness. It quite honestly doesn’t matter which one, if your illness doesn’t have you looking ill, drawn and haggard, then there is nothing wrong.
Even right now, if I let someone, which I normally don’t, to take a photo of me, apart from the wheelchair, I look fine. The fact that I can produce a daily blog, send out tweets and still be part of the world, just all adds up in the eyes of some, to my not being ill. Yes, I can see that. I can see it with ease and it worries me. It wouldn’t have worried me 30, 40 years ago, then it didn’t matter how you looked, if you were signed off by a doctor, who said you were not fit to work, the majority of people accepted it. There were a handful, as there always are, who would look at you quizzically, but they were the minority. What happened to this world, what changed in this world that means being ill, seriously ill, diagnosed with conditions that are killing you, that the majority now will question it? Worse still, our UK government even now question it. I clearly started questioning it a long time ago, as you will have seen from the picture I placed at the top of my introduction post, but something has changed out there, something has made the general public cynical about the whole subject of ill health.
Clearly, I don’t know what the situation is outside the UK, and my thoughts are being formed by what I see on the TV. What is coming across from the news, documentaries and other programs is a perception that we are all at it, we’re scammers who deserve to have our benefits taken from us, and that we should get off our backsides, and find a job. For that, I do to some extent blame our UK government. Their stance and treatment of the chronically ill is shameful. If a doctor has said this or that is wrong with a person, no one has the right, to question that fact and declare them fit for work. But I am not here to shout about politics, as I said, I see that as a factor, but that’s all. I actually think that the real problem is once again down to the media. I mentioned the other day that I was sat listening to a show on health. It was discussing all sort of things, from diet to genetics, it is the type of show that I watch frequently. I think that they are a large part of the issue, as they give the impression, that the majority of illnesses are now curable. Along with the amount of research, that is being declared almost daily as the new miracle cure, the impression is being fed to the masses that once again, the medical world has the answer for everything.
If you are a person, like the majority, who has had nothing to do with anyone with a chronic illness, other than those of old age, that Granny or Grandpa had, I can see where this impression is coming from. 40 years ago, no one heard any of the things that are now discussed freely on the TV. All they heard was what the individual told them, and people were more trusting. If someone said “I have MS”, they only thing they might ask, is “What is that?”. These days the names of conditions are banded about daily, but what they don’t say, is what it means to live with that condition, beyond the names of the symptoms. Hearing about different conditions is a double edged sword. On one hand, it raises the profile, which might be good, but on the other, it makes even the rarest conditions, suddenly mainstream, just like a cough or a cold. If that condition is mentioned alongside a possible cure, the “possible” is forgotten and the impression that remains is that all version and variable of that condition are curable, even when they’re not. I know that one well, my form of MS, PRMS doesn’t even have one single medication that has the slightest effect on it. Yet other forms of MS can find great benefits from an array of different drugs and MS isn’t the only condition this is true for.
Horrifically, on the news today, I heard that the rate of attacks and abuse towards the disabled is rising. Just as it is rising, so is the rates of discrimination towards us as well. Those are the worst end of it, but it feels as though, it is in line with the general attitude towards those who are ill and that we should just be getting on with earning a living and not taking from the state, regardless how ill we are. All that was part of what was behind my starting to write and to be on Twitter, but in the three years that I have been doing all this, it somehow feels as though things are worse out there than they were three years ago. I can’t put an exact date on it, but without a doubt, this change started somewhere in the 80’s and it’s growth isn’t slowing down. Don’t get me wrong, there are some wonderful people out there, people who are genuinely caring and understanding, but not as many as there once were. How we turn this around, put the brakes on and get the truth of not just the odd individual but the masses out there, I don’t know.
From time to time, the soap opera’s will introduce a character who has some illness, and they compact their story into a few short months. The most recent I can think of was a story line on MND. At first, it was well done, it showed the main symptoms that were visual, but, the biggest problem was the person they chose to actually have the disease. He was the nastiest, most unlikable person you could think of. His becoming ill was seen by the majority of those in the storyline as deserved. As though he was getting what was due to him. To me, this didn’t help our situation at all. Even his death was treated without respect and he is right now, hidden inside a wall. What could have been a wonderful opportunity to really show the suffering and pain, the effect of a terminal illness on everyone, not just the patient, was lost. It landed up as more a moral tail, be a nasty person and this is what will happen to you. Not helpful in any way.
I know the world is full of things that just don’t get the time and attention required to be shown in true depth to everyone. That is why I chose not to use my conditions as my pivot, but the whole spectrum of chronic illness. I don’t know how to change the world, but somehow, we have to put the brakes on, stop the decline in how we are treated, thought of and spoken about. None of us asked to be ill, none of us would choose this life. To choose it would be madness as somehow at some point we diminish, we become second class citizens and in some people’s eyes even lower. Who would choose that?
Please read my blog from 2 years ago today – 27/01/2014 – Being you
Two Rooms Plus Utilities 