September 7, 2016

‘You have ….’

There is no turning back.  No way of unhearing what was just said.   ‘You have …’ in my case it is Multiple Sclerosis.  ’But dont worry, it is a good type’. I know that not everyone one is ‘lucky enough’ to have a ‘good’ version of multiple sclerosis.   But knowing that, doesn’t make it easier to accept.  Either the diagnosis or the prognosis. And every new symptom, every flare, seems to take me back to that dark place.  Where fear of the future meets grief for what might have been.

I don’t have the answers.  But, I find the work by Kubler-Ross on ‘the five stages of grief’ to help not just me, but knowing that my family are also on their grief journey.  Knowing that grief is normal, helps me not be overcome too often by my journey.  It also helps me to be patient with friends and family as I recognise that their suggestions and questions are not insensitive, but part of their journey.

If you Google ‘stages of grief’, the internet will give you many versions of what the stages look like.  But I relate to this one because the journey is not lineal.  It isn’t just a straight line from dx to acceptance.  And sometimes we may go backwards before we go forwards.  But as long as we keep moving, and don’t give up.  

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If you follow me on Twitter @urMadeStrong, you will see that while I try to be strong and positive, there are days that I am just not.  There are days I want my old naive life back, there are days that I am scared of the future, helpless and overwhelmed with EVERYTHING.  

In a way, my approach to diet and lifestyle is a little bit of bargaining - If I do this, the disease won’t progress.  This blog is evidence of my need to share my story, and reach out to others.  

So have I reached acceptance yet?  Possibly?  Probably?  Ask me tomorrow … 

References

To understand the five stages in her own words, go to the Elisabeth Kubler-Ross Foundation.  There you will find a number of her newsletters, quotes and links to videos.