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Living in the Lupus Detention House has taught me a brutal kind of grace. I have stopped fighting for the parole of "being cured." Instead, I fight for commutation —the reduction of a sentence.
Advocate for yourself. Fire the doctors who act like cruel guards. Find your cellmates (support groups) who know the secret handshake.
I have learned the power of "Spoon Theory" to explain my daily energy ration. I have learned that "no" is a complete sentence when the warden demands too much. I have learned to find a strange, defiant peace in the quiet days.
One more day survived is one more day the warden didn't win. Disclaimer: This blog post is based on personal metaphor and experience. Lupus affects everyone differently. If you are struggling with a chronic illness, please consult your rheumatologist or a mental health professional.
So, you stop explaining. You retreat to the isolation wing of your own bedroom. You watch your friends live their lives through a phone screen while you lie perfectly still, trying to convince your own blood to stop attacking your heart lining (pericarditis). Every detention house has guards. Mine are orange vials.
Living in the Lupus Detention House has taught me a brutal kind of grace. I have stopped fighting for the parole of "being cured." Instead, I fight for commutation —the reduction of a sentence.
Advocate for yourself. Fire the doctors who act like cruel guards. Find your cellmates (support groups) who know the secret handshake.
I have learned the power of "Spoon Theory" to explain my daily energy ration. I have learned that "no" is a complete sentence when the warden demands too much. I have learned to find a strange, defiant peace in the quiet days.
One more day survived is one more day the warden didn't win. Disclaimer: This blog post is based on personal metaphor and experience. Lupus affects everyone differently. If you are struggling with a chronic illness, please consult your rheumatologist or a mental health professional.
So, you stop explaining. You retreat to the isolation wing of your own bedroom. You watch your friends live their lives through a phone screen while you lie perfectly still, trying to convince your own blood to stop attacking your heart lining (pericarditis). Every detention house has guards. Mine are orange vials.