Mini-blog - it's alright for you...

I try, I do try...

The sentence went - It's alright for you, you only have a minor heart condition.

Now, what I objected to wasn't so much the assumption that I run = minor.  Or indeed the telepathic diagnosis. It was the presumption to rank.

The medical profession tends to have three categories of congenital heart conditions:
  • Simple
  • Moderate
  • Complex
This helps them predict the number that need follow up operations, the rough frequency of outpatient appointments and so on.  Even the medics recognise this is rough and ready, hell the same condition can appear in more than one box... Dependent on the impact it has on the individual and their own unique variant of it (like mine does...).

I have a simpler classification scheme:
  • Have congenital heart condition
  • Affected by congenital heart conditions
  • At sometime will be affected
I can almost feel the ire raising so let me explain.
Have

In my experience the impact of a condition is so variable between individuals that lumping all people with it in one box does no one a service.  The individuals and how they respond to their condition is as unique.  Let them be unique...

Yes there are some similarities - people with a specific condition may have had a specific operation, but after that?  Yes, some conditions have higher mortality, more complicated operations, more side effects, but again its very rare to find two identical individuals. 

There is also the risk that people will hear that they've been told they've a simple condition, which they may translate to only having a simple condition, that can then become they don't need to take the same care of themselves... why should they?  They only have a simple condition... Be careful, words have power!

Affected

Around us there are our parents, family and friends... All of whom are affected by what we live through, by who we are - their responses are as individual as our conditions.  To lump all in the same box diminishes them, they are an important part of our lives.

Will be affected

We are the 1 in 133.  Everyone of interacts with hundreds if not thousands of people a year.  Babies are born with heart conditions every day... Each time we interact more people are affected by us and by extension our conditions.  As the CHD cascade flows through the world as more of us survive childhood and grow up (ok, it's me - become adults) more people will be affected by CHD.

So, respond to the individual and what they say about their heart condition - all congenital heart conditions are serious, all can be complicated and have complications.  What you think is simple will probably be as terrifying to the person and their family as something you think is more complex.  What you think is complicated can be more positively accepted by the individual than something that you consider simple.

So, do not presume... Talk... Listen... and respond to the individual!  On a personal note its part of the reason I know perishingly few of the conditions my friends have - unless they've told me so many times its sunk in....

TTFN

Paul

ps  This post has been in draft for a while, to protect the person who presumed... So as sufficient time has passed to ensure anonymity...

Comments

Popular posts from this blog

Heroes

The end of an era...

Never say Never Again... Apart from this time