I couldn’t believe how tired I found myself yesterday afternoon. I know I still have to wait for the letter to be sure, but I felt like I had had a weight lifted off me, but at the same time, someone had pulled the plug marked energy. I found myself sitting here in the late afternoon, staring at the computer screen and not understanding how I couldn’t solve a simple Sudoku, and I do mean simple. My brain was befuddled by everything that had happened that morning, but what was getting to me the most was the fact that the woman who was here in the morning, quite clearly didn’t agree with the system any more than we did. She told us that so many people find the whole system wrong, especially for the reason I did, the feeling that we have to prove we are ill, even when we’ve been diagnosed by our doctors. The most telling thing, though, was her words, the way she said things, hedged so that she didn’t say anything that might lose her, her job, but still saying clearly that she saw the way they had switched systems as unfair. She clearly had to tow the line, like many of us have had to do, because we need a job. I equally got the feeling from her, that just as I would have done in her position, she was still going to do her job to the full.

I was lucky, I only had one job where I landed up feeling that way, that I would rather be doing anything, but what I was, as morally, I couldn’t deal with it any longer. I was selling what was called below the line advertising. In simple terms, I sold advertising space in publications where part of the cost of the ad, was given to charity. I eventually worked out that the charity got less than 5%, and although they would have got nothing otherwise, I just couldn’t settle the dilemma in my mind. The problem is, we all have to live, we all have bills to pay and if we don’t work, what then. Not all of us have the luxury of doing a job that we love in every way, but regardless of that, many of us still manage to separate our emotions and remain professional. Humans are amazing, I can’t help but wonder what the world would be like, if, we all stopped acting, and I don’t just mean at work. I have admitted freely that I have, and still do, use bravado in huge amounts to get me through the tough points. The people we deal with daily are just the same, could you imagine what it would be like to walk into a large store, where everyone was totally honest about how they felt at that moment, and where expressing and talking that way freely. Instead, we all wonder around lying to each other, pretending that everything in life is perfect. Sorry, I know that’s a bit off the wall, but yesterday made me notice it so strongly. Here we were, a woman who clearly isn’t at peace with the job she does but is a professional, myself, with bravado flowing like water, but failing as I went into frequent stuttering messes, and Adam equally stressed, but desperately trying to make general chit chat to ease the process along. Although every word that was said, was honest and appropriate, not one of us was actually being ourselves.

Without a doubt, it is something that I have seen in bucket loads since my diagnosis. I doubt there is one of us who feels that some of our doctors aren’t giving us anything, other than a practised routine. One they have honed over the year, for when it comes to dealing with the bad news. If you like, their trained bedside manner but usually without the bed. After receiving little other than bad news, I would go as far as to say, that I know now before they say anything, just what is coming. You learn to read their body language, as it is far more reliable than their words often are. Without a doubt, they have to learn to, as if they allowed themselves to be emotional, they wouldn’t last a week, far less a whole career. Some take it too far, though, as I have met a few, who I can say are nothing other than cold fish. Their separation from their emotions is so severe, that they come across even in their body language, as not caring, just doing the job and nothing else. They just sit there speaking as though they are reading a telephone directory, not a human being talking to another human, telling them that they have yet another condition, that is going to make their life harder.

When I look back to the days when I was being misdiagnosed, I can remember clearly how it felt to be sat there, being told politely that I was either nuts or a liar. The human factor always seemed to be missing, the whole idea that I was actually a person who was ill, was treated abdominally. So OK, they couldn’t confirm what I was saying as a condition they understood, but being dismissed, being told to go away and stop being a pest, as that is how it felt, was almost as bad as dealing silently with my condition. Getting the balance between the reality of doing a job, and being a compassionate human, really shouldn’t be that hard. Just as they learn a bedside manner for giving what they believe is bad news, surely they should learn one, for giving what is going to be for the patient, anything but good news. Yes, they do know we are desperate for help, being told they can’t give it, is almost equally as bad, as being told they have at last found it.

Body language, bravado, being business-like, playing all the acting games we each do daily, is essential for society, otherwise, well none of us really want to see that truth, but just occasionally, wouldn’t it be nice to have a true human to human interaction that isn’t cluttered with all those lies.

Please read my blog from 2 years ago today – 27/04/2014 – I survived

It is strange to look back and remember those hope we all had when we first set out on life for ourselves without the financial support of our families and no one sitting waiting for us to come home at the end of the day. For me well I had a short taste of about 18 months of being thrown out there, rather than launched when I was just 15. No matter how hard I think about it, the one thing I never felt was fear, nor did I ever feel there was the slightest possibility that I might just not make it. It wasn’t just the bravado of a teenager, but not making it, not having a life I would look back on and pat myself on the back for surviving with a touch of personal style, just wasn’t….