Friday, October 29, 2010


Until I read the article I linked to in the previous post I had no idea that I felt shame about my illness.  Realising this makes sense of some of how I feel particularly when I get angry and frustrated.

I hate it when people ask me what is wrong with me.  I don’t mean that I am offended by them asking. It is a natural thing to ask. I just find it triggered shame for some reason.

Take today for example.  I am buggered as they say.  It has been an hour since I took my medication and I don’t feel any better so my plans to today will not come to fruition.  I will manage to put the socks in the machine as today is sock washing day but that is probably it.

I get embarrassed when people comment about how often they see me on Facebook. I have an active mind.  I spend a lot of time sitting down.  The laptop is right next to me.  I check it regularly and if I feel like it I comment.

Some people seem to think I do a lot each day.  I don’t.  I am not lying when I say that I spend most of my time sitting down.  I may well go for a swim each morning, or at least I tried to, but I force myself to do this because it is really important in helping to keep me mobile and to keep my weight down.  Everything else I do after that is very dependent on how I am on any given day or at any given hour.

Someone recently asked me how many kilos of yarn I dyed a week! There is no way I could dye kilos of yarn a week! I dyed half a kilo on Tuesday the but not without a lot of medication.

Like the woman in the article everything I do need a lot of preparation and a lot of planning.  Even if we just go to the mall on a Saturday or Sunday, that does me in even though I am in my wheelchair.

I am thinking about why all of this should make me feel shame.  I know my father would see my condition as a weakness and me as a sissy for letting it interfere with my life.  However that is how my father always saw me.  He detested me from birth I think and if not from birth certainly by the time I was five or six when it was obvious to him I suppose that I was not going to be a macho soldier man like he was. (I am indeed very grateful that I’m not like my father as he was a bully, a judgemental hypocrite and extremely self-centred.)

Just when you think it’s safe to go back in the water!  The gaining of self-knowledge really never ends.  I am surprised, and also not surprised, to find so much shame wrapped up with my disease.  I don’t think it is just that it prevents me functioning.  I think that I feel somewhat responsible for it.I am well aware that modern research has shown that adults who had extremely stressful childhoods, as I did, are very prone to inflammatory disease as adults due to the constant production of cortisol in their childhoods.It is also known that the brain gets hot wired into reacting in a certain way to stress because of this prolonged exposure to it while the brain is developing.  Of us as an adult the body’s stress triggers are ultra sensitive. On top of this, I was actively anorexic/bulimic from 15 to 30. It is not surprising to me therefore that I now need medication for my gut to work properly and that I have so much trouble with my joints and spine bones.

However, most importantly for me I am no longer in the mental and emotional distress that I lived with for many years.In fact I lived with it all of my life until three years ago.  This physical stuff I deal with now is much easier and far preferable.

Now that I know that I have shame in the mix with my disease I am sure it won’t be long before that is no longer the case. Experience tells me that once I recognise a problem it is not long before it is either lessened  or eliminated.

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