For Justice, 30, and Tara, 29, the road to understanding their own bodies was long, exhausting, and often deeply discouraging. Both women live with narcolepsy Type 1 (NT1), a chronic neurological disorder that affects the brain’s ability to regulate sleep and wakefulness and both spent years searching for answers before anyone gave them the right ones.

Their stories are not unique in the world of NT1. On average, it takes up to 10 years for a person to receive a proper narcolepsy diagnosis, with women frequently waiting even longer than men despite experiencing symptoms of equal severity. For a condition that affects every corner of daily life, that delay carries a serious cost.

What narcolepsy Type 1 actually is

NT1 goes well beyond feeling tired. The condition is defined by excessive daytime sleepiness, disrupted nighttime sleep, and cataplexy a sudden, involuntary loss of muscle tone that is typically triggered by strong emotions such as laughter or surprise. At its root, NT1 is caused by a deficiency in orexin, a brain chemical that plays a central role in keeping the sleep-wake cycle in balance.

Because its symptoms can mimic personality traits or mental health conditions, NT1 is frequently misread by both patients and medical professionals. People living with it are often told they are simply lazy, depressed, or anxious labels that delay real answers and add unnecessary weight to an already difficult experience.

The long road to understanding

Justice first noticed something was seriously wrong during a college basketball recruiting visit, when she fell asleep in the middle of a meeting with a school’s associate athletic director. The moment was impossible to ignore, and it eventually led her to pursue a diagnosis. She was 18 when she finally received one.

Even with answers in hand, the challenges didn’t disappear overnight. Navigating college athletics with NT1 meant managing unexpected sleep episodes during lectures and practices, learning her personal triggers, and building a daily routine structured around her condition rather than against it.

Tara’s path looked different but carried the same weight. For years before her NT1 diagnosis at 22, she was misdiagnosed with multiple mental health conditions. The impact on her confidence and her relationships was significant. When the correct diagnosis finally arrived, the relief wasn’t just medical it was deeply personal. Understanding that her struggles had a neurological explanation, not a character flaw at their center, changed how she saw herself entirely.

Turning diagnosis into advocacy

Today, both women use their experiences to push for greater awareness around NT1. Justice is active on social media, openly documenting the day-to-day realities of the condition from the unpredictability of sleep episodes to the ongoing effort required just to stay present in her own life. Her goal is to be the resource she never had when she was first diagnosed.

Tara channels her energy into education, making clear that no two people experience narcolepsy the same way. Both women emphasize the value of community whether found through online support groups, advocacy organizations, or simply connecting with others who understand the experience firsthand. For each of them, finding that sense of belonging was a turning point.

The power of not giving up

Perhaps the most consistent thread running through both women’s stories is the importance of self-advocacy. Years of being dismissed taught them to trust what their bodies were telling them, to press for further evaluation when answers felt incomplete, and to refuse to accept explanations that didn’t hold up.

Reframing NT1 as a neurological condition rather than a reflection of personal weakness or failure proved transformative for both Justice and Tara. That shift in thinking didn’t just change how they managed their health. It changed how they moved through the world.

Their message to others who may be living with undiagnosed or misunderstood symptoms is consistent: keep advocating. Keep asking questions. And don’t stop until you feel genuinely heard. Anyone with concerns about NT1 symptoms is encouraged to speak with a qualified healthcare professional.