“Maybe It’s Lyme: What Happens When Illness Becomes an Identity?”, Molly Fischer2019-07-24 (psychiatry)⁠:

This is the rallying cry of the Lyme Warrior. Spend a while browsing #lymewarrior on Instagram and what you find looks like wellness content at first. There are selfies, shots of food, talk of toxins, exhortations toward self-care. There are more extensive arrays of supplements than you might expect. Then the IVs snake into view. There are hospital gowns and seats at outpatient-treatment centers and surgically implanted ports displayed with pride. This is wellness predicated on the constant certainty that all is not well. Like Hadid, the Lyme Warriors struggle against those who would doubt their condition, and, like Hadid, they are firm in their resolve. They have a name, and they have each other.

Where Murray sought to answer a question, the warrior who now takes up the cause of chronic Lyme is seeking to affirm an answer. For this community of patients, Lyme has come to function as something more expansive than a diagnosis. While Lyme disease is a specific medical condition—one that may manifest more severely or less, be treated more easily or less—chronic Lyme is something else altogether. (The medical establishment generally avoids using the term chronic Lyme, and because of this establishment wariness, advocates who believe Lyme is a chronic infection now sometimes advise patients to avoid it too.) This version of Lyme has no consistent symptoms, no fixed criteria, and no accurate test. This Lyme is a kind of identity. Lyme is a label for a state of being, a word that conveys your understanding of your lived experience. Lyme provides the language to articulate that experience and join with others who share it. In the world of chronic Lyme, doctors are trustworthy (or not) based on their willingness to treat Lyme. Tests are trustworthy (or not) based on their ability to confirm Lyme. Lyme is the fundamental fact, and you work backward from there. Lyme is a community with a cause: the recognition of its sufferers’ suffering—and, with it, the recognition of Lyme.