Living with a severe chronic illness can get beyond challenging and it is important to remember that beyond motivational phrases which promise the world, are real people who are struggling with the very fundamentals of life. Quite often, they have simply drawn a short straw and there is no blame. This is when we need to convert compassion into love in action and do, do, do (with permission of course). I’ll also note that it’s important not to treat people who are struggling as a case or some way for us to have a purpose. It’s a fine balance xx Rowena
“Oh, no. Why are you crying?” But I didn’t have to ask. I already knew.
“I am tired of hurting, Doc.”
I knew she was suffering. Since her lupus diagnosis two years ago her life had crumbled. She had been a vibrant, funny, joyful young woman.
Now she was a shell of her former self.
Bloated with an over 100 pound weight gain from the steroids. Hair falling out. Disfiguring skin rashes. In and out of the hospital with infections and blood clots. Kidney damage. Lung involvement. Losing her vision. She was in so much pain that she was wheelchair confined and maxed out on opiates.
We could find NO medication that could bring her disease under control.
She had a physician from every known specialty. Coordinating visits was a challenge…
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