I often wonder what it must be like for the people closest to me now that I have sarcoidosis.
I often wonder what they must think of what has become of me.
What should they say to me? What would be helpful? It must be difficult not knowing.
I often wonder what it is like for them to watch me deteriorate physically. Do they even notice?
It’s subtle but it is happening. My physical strength is drained just a little every day.
And for those who don’t live near me to regularly observe and absorb these subtle changes, are they more or are the less obvious?
I put on a brave face and I try to hide as much of my disease as I can. I try to look as good as I am able. I pull myself through unbearable fatigue in the presence of my loved ones. Maybe they don’t notice anything. I just don’t know.
I often wonder what it must be like to be their shoes…
My husband wrote a blog about it, just last week. It is in dutch but maybe you can read it with google translate? http://sytzesteenstra.wordpress.com It is not easy, not for us, but for them too
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