When you look healthy on the outside, but your kidneys are staging a revolt on the inside, people don't see a prisoner. They see someone who "doesn't look sick." They see a lazy person who cancels plans. They see a flake.
I am grateful for the guards. But I do not trust them. You might be wondering: Why stay? Why not escape? lupus detention house
For the uninitiated, Systemic Lupus Erythematosus (SLE) is an autoimmune disease. In plain English: my immune system, the very guard dog meant to protect me from intruders (viruses, bacteria, infections), has gone rogue. It can no longer tell the difference between a foreign invader and my own tissue. When you look healthy on the outside, but
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. I am grateful for the guards
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.