Monday, 16 September 2013

Hearing it for the first time all over again

I live with several long term health conditions.

I am going to be living with these conditions for longer than it takes to get to the edge of the solar system (according the recent NASA Voyager announcement at least!)

Whilst I know that my conditions are neither terminal nor degenerative, I know that I am going to live with them for the rest of my life

I introduce myself to students I am teaching, fellow patients I support via Expert Patient Programmes and delegates I talk to at conferences as someone who lives with long term health conditions. 

It is even on my Twitter bio.

So why, when my doctor mentions that my conditions are "long-term" or that I am going to having to face this for the rest of my life, does it feel like he is telling me for the first time again?! Why does my heart break all over again, and all those emotions come flooding back?

I like to think I am quite rational - I am pretty realistic about my situation, and am well aware that little will change with each appointment. But I must have a glimmer of hope subconsciously inside me that gets extinguished by my doctors in each appointment. Somehow, in the clinical way they say it, it confirms what I already know (but haven't necessarily come to believe or accept) - that there isn't anything out there that is going to cure it. 

The long term-ness of my condition struck me recently when a friend was recovering from an operation. For a few weeks, she was as immobile and limited as I am. But then she got better and got back to life. I am still the same - immobile and limited. Other people who are ill for a few weeks can provide temporary company in the lonely place that is the Land of the Ill. They are very positive about this novel experience of having time to read lots of magazines and catch up on TV box sets. They wait to get better before starting physio etc. again. I am faced with an eternity of this and so can't just write off the rest of my life and read the glossy magazines cover to cover. If I waited until I was better to start physio, it wouldn't happen. I have had to learn to function and do the exercises whilst still feeling rotten. 

This isn't to say that it is easy being acutely ill. It is not. But long term health conditions are on a time scale that I can't even begin to explain. Every day... day in, day out... with no weekends or holidays... no let up even for special occasions... It is relentless. 

I don't think that is something you can ever get your head round, which is why all the "live in the day" thinking is so helpful. But when I hear my doctor say "long term", that little flame of hope inside me dies. Again. Each time. No matter how much you know it, hearing it in black and white in such a commonly used phrase from your doctor is like hearing it for the first time all over again. 
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  1. got easier for me to live with as I began to see me as healthy even though the health service see me as long-term unhealthy! It came with my acceptance that this is how I am...took about 7 years! X

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    1. I have a few more years to go then! ; )
      Thank you for your encouraging words!

  3. Thank you, as always, for sharing with such honesty, Anya.
    I repeat my call that all medics (students and professionals)should read your blog and other "lived experiences" of people who write so well and powerfully, in addition to their more formal academic / medical learning. Keep writing and raising awareness. Sending love and best wishes. x

    1. Thank you!
      My stats are going up so somebody must be reading it!