So this is Normality? Chronic Illness, Simon Cowell and Getting Real

I do remember when I received my wake up call.  I was in the consulting room at the Central Middlesex Hospital in London, sat opposite the most awesome Rheumatologist I have ever known, Dr Alan Hakim.  By this point I had been chronically ill with actual diagnosed illnesses for five years, with many years of struggling for a diagnosis beforehand.  He had just diagnosed me with Classical Type Ehlers-Danlos Syndrome.  I can’t remember the lead up, but I made the statement, “I know I’ll never be normal.”

He looked at me, unblinking and said, “What is normal?  Define normal.”  And I couldn’t.  “Normal is what is normal for you,” he explained, and I realised he was right.  There was no reason to sit and be bitter about my diagnoses, that now I had been diagnosed with EDS, I knew that the likelihood of my previously diagnosed ME/CFS ever getting better was now a very remote possibility.  All I could do was to get on with things, work out what it was I wanted to do.

It was at this point that he asked me had I thought about considering a career in Health Psychology?  I had told him I had studied Cognitive Science as an undergraduate, but I had never heard of this discipline.  He said he thought I could use my experiences to work in the field, and I resolved to look into it.

At the point of writing this, I have a Masters in Health Psychology.  I have been trying to get work as an assistant Health Psychologist, but competition is fierce, and with my accumulation of diagnoses since I first started on this path I am really not up to that kind of work at the moment.  Maybe that will change, but I don’t dwell on it.  The ultimate goal is to do a distance learning doctorate in the subject, but my current finances definitely do not allow for this although I know exactly what university offers this and the structure of the course.  Instead I have been trying to find ways of putting my education as it stands into good use.  That was always my aim and I seem to have been somewhat derailed.

I think that I was right when I previously said fear was holding me back.  But it’s actually not fear of failing in the classic sense, I’m actually scared of people misunderstanding my viewpoint.  I do approach my conditions differently, I have since the consultation I described above.  Years ago I used to regularly get into discussions where people did not understand that I am on the side of those with chronic illness, but I do not believe that there is no hope, as long as you are willing to help yourself as much as you can.  More recently I have bitten my tongue about some of my more extreme viewpoints, but I actually think that they need to be said, because somewhere out there someone else is thinking those things, and thinking that they too are the only one, too scared to speak out.

But you know what?  I really do think I have something valid to say.  I don’t do dry self-help, I don’t do Zen, but I do believe in getting real about living with chronic illness.  Earlier today I heard someone say they admired Simon Cowell for his brutal honesty and his absolute belief in his own opinions and abilities.  I need to be more like that.  I need to be the Simon Cowell of chronic illness.  It’s time to be honest, be practical, get real.  This is my experience.  This is my normality.

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