March 8, 2024

How a Rare Diagnosis Drastically Changed My Life Forever


Posted by Sharmarke Hujale


2 min read

We often don’t appreciate what we’ve until it’s gone.

That reality hit me in mid-December 2022 when everything stopped. I woke up to a spinning world. I was dizzy, unsteady, and had trouble with my hearing and vision.

It was sudden. It left me overwhelmed and afraid for my future.

After many tests in early 2023, I was diagnosed with Cogan’s Syndrome. A rare autoimmune condition that affected my vision, hearing, and balance. It forced me to pause my life.

The constant cycle of hope and despair was evident.

Living with this uncertainty was frightening. Yet, doing nothing was worse. Accepting reality was one thing. But another was to proactively do something within my capacity.

I was challenged. I couldn’t drive (and still can’t), struggled with outdoor runs, maintaining balance, prolonged screen time, and hearing people clearly in crowded places.

So far, my journey has involved over 30 blood tests, 4 scans, a lumbar puncture (never thought I’d ever try it), and consultations with 31 different specialists.

This experience has been a rollercoaster of emotions for someone who was previously healthy.

Yet, it has taught me invaluable lessons:

Lesson #1: Cherishing Health and Well-being

I’ve learned to deeply value my health and well-being. I was forced to take it slow. I wasn’t the best at this before it happened.

But without these being taken care of, it’ll impact your work, career, and life. They shouldn’t be a backup. But a priority.

Lesson #2: The Importance of a Support System

I’m grateful for the support I received from my wife, both our families and close friends.

Surrounding yourself with caring people is important for mental stability during uncertain times.

Lesson #3: Building Mental Resilience

I focused on building mental strength from day one to compensate for my physical limitations. Each setback made me stronger.

I used a lot of my time learning about my body and how it functions. And discovering Wim Hof’s method of deep breathing and cold exposure helped me connect with my body.

Lesson #4: Be Compassionate

My condition is often invisible to others (unless you notice my “invisible” hearing aids or my struggle with balance while walking).

This reminded me that many people face hidden challenges. Simply being aware, compassionate, and understanding goes a long way.

One thing is certain: Though my condition is unpredictable, I’ve learned to remain optimistic and have faith that everything happens for a reason.

I’m taking life one day at a time.

We can’t control everything that happens to us. But we can control how we respond.

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