My Spoonie Sisters

Lemon or Lyme? Part 1


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Chronic illness steals more than your health—it can rob you of your identity and everything you once loved. For Shira Haid, a classically trained musician and clinical massage therapist, the onset of multiple tick-borne illnesses, including Lyme disease, marked the beginning of a devastating transformation. What began as extreme fatigue in 2014 quickly spiraled into debilitating pain, cognitive dysfunction, and the loss of her independence.

The road to diagnosis proved maddening. Despite having a physician father actively helping with her care, Shira endured nearly two years of deteriorating health before finally discovering the root cause. Along the way, she faced shocking examples of medical gaslighting—being accused of drug use, labeled a "Lyme loony," and even receiving suggestions from a doctor about how she "should kill herself next time." These experiences highlight the profound ignorance and dismissal many chronic illness patients face when seeking help.

Perhaps most heartbreaking was Shira's disconnection from her artistic self. "For a very long time, my thought process was what is the point? There's no point in my artwork anymore, there's no point in doing music anymore, because that's over," she reveals. This creative death felt as painful as her physical symptoms, leaving her a shell of her former self.

The financial reality of chronic Lyme disease compounds these challenges. With insurance companies refusing coverage—even after the CDC's recent acknowledgment that Lyme can be chronic—Shira estimates her family has spent hundreds of thousands of dollars on treatments. Not everyone has this privilege, leading many patients to attempt creating their own treatment protocols out of desperation.

Yet through therapy, nutritional changes, and gradually reconnecting with her creative passions, Shira has begun the slow journey back to herself. When she finally sang again after years of silence, the experience brought tears and a flood of emotions, reminding her of the person she once was and could be again.

Have you experienced medical gaslighting or the grief of losing parts of your identity to illness? Share your story in the comments and join our community of resilient chronic illness warriors helping each other find a path forward.

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My Spoonie SistersBy Jen Weaver

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