Voices Across America

Undiagnosed Lyme Stole My Childhood

Grace

State: Ohio
Congressional District: OH03

Diseases

Bone / Muscle Disease, Chronic Pain, Gastrointestinal Disease, Immune Disease, Mental Health, Neurological Disease, Rare Disease, Reproductive Disease, Skin Disease

Issues and Challenges

Grace has encountered: Access to Medicine, Copay Issues, Rare / Underserved Disease, Gaslighting, Suicide / Self-harm, Underserved Community

My Story

In high school, I became sick with a “mystery illness” (later diagnosed as Lyme disease). I went from an active, thriving teenage girl to bedridden within months. I was gaslit by medical professionals for years before I was properly diagnosed, which cost me several years of my youth waiting in limbo while my condition worsened. I struggled severally with suicidal ideation, depression, and anxiety in addition to my severe physical symptoms due to this, as well as becoming isolated, and not finding any answers.

Because it took so long to diagnose, I am still treating my Lyme and Co-infections at almost 22 now, and it’s super hard. I will likely have some autoimmunity issues also as a by-product of the Lyme being untreated for so long, but we are working on figuring that out right now too. Lyme disease causes a LOT of damage. But even with that, I am finally starting to get some semblance of who I was before this trauma. I am so grateful to still be here, and that is why I want to dedicate my life and eventual career to advocacy.

My Motivation and Inspiration

Chronic/invisible/untreated illness takes a toll on a person, especially a child, in every way imaginable. I am no exception in that. In spite of that, I am motivated by the idea that there are others out there like me, especially kids, who are struggling with losing their health. They need a voice. They need to know that their suffering is not being ignored. They deserve answers and every opportunity for a life that is as comfortable and accessible as possible. But most importantly, I am motivated by the prospect that there is always hope for a better, more healthful future, for myself, and for anyone else who is struggling the same ways that I do.

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