Time and time again, I find myself haunted by expectations I can no longer meet. Orderly tasks I cannot single-handedly do independently anymore and haunted by the loss of what could’ve been.

There’s a loss of identity that comes with chronic illness, not just the pain or fatigue, but the loss of your previous self. I used to be the girl who could sprint effortlessly under the sun, who raised her hand without hesitation, who attended school and participated everyday. I was curious, driven, and certain of where I was going, and what I could bring to my future.

I live in the shadow of that version of myself burdened by her bags of expectation.

Ideas showcases stories, opinion and analysis about Hawaiʻi, from the state’s sharpest thinkers, to stretch our collective thinking about a problem or an issue. Email news@civilbeat.org to submit an idea or an essay.

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I was recently diagnosed with lupus, a chronic autoimmune condition. Some days, I can function almost normally. Other days, flare-ups take that functionality away, my energy, my focus, my ability to show up in the way school expects of me. I felt like I had to work harder to reach the bare minimum of my peers. It felt harder to fulfill what I previously found easy in the past.

And it’s not just me, there are other students facing these challenges. Our education system is not built for unpredictability. It expects consistency: consistent attendance, consistent productivity, consistent performance and participation. But for students like me, consistency is not a given option we can consider.

Federal protections like Section 504 exist to support students with disabilities. But in practice, the support for chronic and episodic conditions, especially those that fluctuate is often inconsistent. Some teachers understand. Some systems adapt and others don’t.

We fall behind not because we are incapable, but because we are navigating conditions that fluctuate and feel invisible to the naked eye. Sometimes feeling unsupported and misunderstood about our condition.

In Hawaiʻi, this issue carries more impact for our students. Autoimmune conditions like lupus are more prevalent among Native Hawaiian, Pacific Islander, and Asian populations, which affects the majority of our population.

This legislative session, I worked with the Department of Education to further adapt Section 504 to accommodate flare-ups and helped draft a resolution encouraging clearer guidance and more consistent support for students with chronic illness. Even without immediate policy change, the conversations this effort sparked matter towards these issues and support for our students.

Because what students like me need is not pity or lowered expectations. We need an understanding of us. We need flexibility. We need consistency in the support that we need in class. No student should have to grieve who they used to be while also fighting to keep up in school and no student should have to choose between their health and their education.