The Journey to Diagnosis: Living with an Invisible Disability

3 December, Malé: I was diagnosed at age 21, with Type 1 Diabetes. Growing up, my body was trying to tell a story that no one could understand, especially not me. What made it such a challenge was that my disability was invisible, and it took years to get a proper diagnosis – something that’s unfortunately all too common for many people living with hidden conditions.

At just eight years old, my life became a puzzle of unexplained symptoms. Severe abdominal pain would strike without warning, followed by bouts of vomiting that left me depleted. Nights were particularly difficult; intense leg pain kept me awake- stacking pillows at the foot of my bed to elevate my legs, desperately seeking relief. The fatigue was overwhelming, forcing me to spend some days in bed with zero energy, caught in cycles of vomitting and exhaustion. Through it all, my mother’s homemade lemonade became a small comfort, a ritual that somehow helped me push through those difficult days.

My love for activeness kept me going even though my body often protested. I participated in sports in school, daily skating, gymnastics, athletics, basketball, and just playing and swimming with my cousins as a kid. Looking back, perhaps this resilience is what kept me alive during those years of delayed diagnosis. Without diagnosis and treatment, Type 1 Diabetes typically leads to coma or death within just a few years.

The situation escalated dramatically when I turned fifteen. My body began sending even more urgent signals: bald patches appeared on my head, a clear sign of an autoimmune response that was dismissed by doctors as mere stress. I knew in my heart this wasn’t stress- I couldn’t recall feeling particularly anxious about anything. Then came the emergency room visits, each one following the same frustrating pattern: I would fall to a near-hallucinatory state, go to the hospital, they’d hook me up to an IV, diagnose it as gas, and send me home when I would feel more conscious.

What I didn’t know then was that these episodes were caused by dangerous drops in my blood sugar. My brain was literally being starved of the fuel it needed to function, leading to frightening periods of confusion and anxiety. There were days when the world around me became a blur, and I felt completely untethered from reality. The most devastating impact was emotional – experiencing anxiety and panic attacks at such a young age, year after year, without understanding why. There were moments when I felt like I was losing my mind, unable to make sense of what was happening to me and around me.

The diagnosis, when it finally came, was both a relief and a new challenge. I learned that my confusion and disorientation were tied to blood sugar levels that would plummet to dangerously low levels of around 30- even before I began insulin treatment. When my first internal doctor dismissed identifying the specific type, claiming ‘the exact type doesn’t matter because treatment is the same,’ he was not only incorrect but dangerously misleading – different types of diabetes require fundamentally different treatments and approaches to management.

Fear of needles led me to delay starting insulin, but when my body entered starvation mode, I had to find courage I didn’t know I had. Sometimes the bravest thing we can do is face our fears when our lives depend on it.

Living with an invisible disability means my mood and mind depend entirely on my blood sugar levels. Falling asleep is hard, but getting out of the bed in the morning is harder. Each night brings its own struggle with careful calculations and insulin measurements, while mornings arrive with the harder challenge of facing whatever numbers await. I’ve learned my own tricks of the trade now to face the day- planning the first thing I do in the morning- skating, swimming, time with friends- to find a reason to get up and out. Some days, just getting out into the sunlight feels like a victory. It’s a silent battle, but one I fight with careful precision, one sunrise at a time, knowing that tomorrow might bring its own set of challenges but also its own small triumphs.