Lyme patients often describe their symptoms differently than others expect, because their symptoms ARE different. Their brains DO hurt. Their bones hurt. They feel like their insides are rotting. The pain moves from one body part to another and is hard to describe. Sometimes, they see things that aren't there - shadows floating through their field of vision, shadowy objects around them, sometimes full-on hallucinations. They KNOW those things aren't real. Looking healthy-ish on the outside is a handicap because if Lymies looked worse maybe more people would believe them when they say they feel bad. No, Josey doesn't run a fever. Her body temperature is too low because of Lyme, related infections, and other problems. "Brain fog" is real so remembering and concentrating on things is a challenge or impossible. School feels impossible because of the memory issues and the added stress. Josey doesn't drive any more and she just got her license in September of last year. She has a cute little car sitting in the driveway that seems to taunt her, reminding her of what she's lost. Without warning, her heart will race. Sometimes she says her heart hurts, with painful pulsing beats. Everyone else in the house can be warm, and Josey is freezing. Or vice versa.
She and all the other chronic Lyme sufferers just need people to understand. Know what this disease is, know what the symptoms are, try to understand. Be educated. Be compassionate and empathic. Fight Lyme in whatever way suits you: Fight with us so diagnosis, support, and treatments are easier for the next person.
Josey fights Lyme. She's going to win.