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SPOT ON!

Posted by barefut , 31 August 2009 · 959 views

"No one realises, even myself sometimes, how much of an impact a chronic disease can have upon a person." - Barb Lowe

I was going to blog about what I had been up to this past month but after reading Barb's blog this morning, I have another agenda.

You said it sister! Sneaky, insidious, scleroderma. I think that should be the official diagnoses - SIS. Barb talked about how she puts on a good show of hiding her visible symptoms. I want to talk about the impact of invisible symptoms. When people don't see anything wrong with you, they can't help but wonder, "What is her problem?" Boy isn't she: a whiner, lazy, helpless, sympathy monger, slob, careless, unproductive, slow learner, stupid, clumsy, forgetful....All things no one wants the reputation of being.

And so we have a choice. We can give up and pretend not to care what others think about us or we can fight against it, (as well as our pain) and try to prove that we are not these things. That we are "normal", that we can 'compete' with the healthy people and also have a nice yard, a clean house, a sharp mind, motivation, ambition, strength, endurance, and have energy left over to help others.

My first choice is the latter and when I exhaust myself from pretending I am 'normal' then I choose to pretend not to care. Pretending has apparently become a way of life and therefore it really does feel like living a lie.




I do agree with the notion of living as normal a life as possible, just getting on with it as best one can, but sometimes it does all get a bit much, I have to say. Usually towards the end of winter when good old Raynaud's has given me a run for my money and my back is hunched and crunched from the cold and I'm a bit down anyway - that's when I crumble briefly into a pile and indulge in a little good old fashioned self-indulgent whoa-is-me. Then I pick myself up, welcome in the buzz of spring and pretend I'm normal again.
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