Not Uncommon

I just wrote a post to somewhere, to a group of people, but I think it’s worth posting here too:


I think what most people fail to consider in their determinations on how things happen and why is the most basic start point. We all need to remember we are dealing with a life long disease.

How did you feel when you first found out?

Can you remember?

I can remember being different, always, in everything. The diagnosis for me was just another nail in the coffin.

Do you recall going to doctors saying ‘there’s something wrong, there’s something wrong, there’s something wrong, and hearing back ‘it’s nothing you’re ok, it’s nothing you’re ok, it’s nothing you’re ok?’

Maybe you can recall instances of when you should have been diagnosed and weren’t? Maybe that happened many times?

Do you remember the frustration of being told nothing sensible?

Do you remember being treated like an imbecile? This information is far too devastating, serious, complicated, for a mere patient to understand! You must be kept in the dark, you might even imagine the disease is much more serious than it is, if you’re told anything.

What does all this cause, all this stuff that goes on around your diagnosis?

What about when you remember those times, what emotions do you feel?

Have you known a close relative who has died, or a close friend? How did you feel when you discovered your loss? What is that called?

That’s called ‘GRIEF’ isn’t it, I’m sure it is. The grief of the loss is very powerful, your mood might even change, you might very sad, cry, maybe even be inconsolable for a time. And as time passes that grief fades and life continues.

But when you’re diagnosed with a life long disease, your grief remains. You remember all those difficult times associated with your diagnosis, and you feel it again, and again, and again. Regardless of how much you know, and I know, the grief remains.

If only it can be forgotten about, just do whatever you need to do and never consider it. That would be easy if it were possible to never need therapy. But by the end of the regime you’re on, you remember it all over again. And your mood might change, it might be so regular that you don’t even know why anymore, this is life the way you know it. My life is the only one I’ve had, other people must be the same as me, they must be re-experiencing that initial diagnosis and the emotions surrounding it, over and over again.

I can be going about my work and thought just pops into my mind of a long lost relative, and I feel the grief of that loss, just for a moment, then it passes. But this disease is a constant, and I remember the emotions associated with it regularly, and I feel the grief again. My mood might change, just for a moment, maybe a bit longer, and life goes on.

When I don’t have my therapy properly I experience another grief. It’s called tiredness. Yeah I get very tired when I don’t maintain my dose. When I was taking Panteston Capsules I mapped my dosage very carefully for a month, taking careful notes of when I took my medication. Over a month I’d miss a third of all doses. I was tired a lot, and I was very moody, and irritable, and tired. And all the guys I hung around with at work, they had much more energy than me, and I couldn’t keep up. They’d encourage me to go to gym, and weight lift, but it’s just too hard to explain, constantly why I’m not that get up and go-ish.

All these things add to grief, that elusive emotion that sweeps in like a mist as if there was no cause, but there is, and I need to recognise it. I think you do too.