May 12, 2023

Living With Uncertainty

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Posted by Sharmarke Hujale

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2 min read

I hope that by sharing my journey, I can inspire you to appreciate your health and well-being and find strength in the face of uncertainty.

The Unexpected Diagnosis

Cogan’s Syndrome is a rare autoimmune disease. I’ve been battling this challenging condition since the middle of December. Which has resulted in vision problems, hearing impairment, and balance issues. The initial shock of the diagnosis was overwhelming.

I didn’t know what was happening to me. I was scared. This sudden shift in life caught me off guard. Leaving me frightened, and uncertain about the future.

It was after several tests and scans over the weeks that I got the diagnosis. The diagnosis is based on clinical findings and exclusions of other causes. The experience has been an emotional rollercoaster. But truly it has also been a humbling one.

Finding Strengths Amidst the Struggles

The experience also taught me (the hard way) that my diagnosis doesn’t define me or make me weak. It’s made me even stronger, mentally. And helped me understand what it means to thrive and live a meaningful life. It forced me to adapt, persevere, and stay hopeful even when things are tough.

I have struggled with feelings of anxiety, stress, and frustration while trying to navigate this new reality and understand it all.

A Reminder to Cherish Our Health and Well-being

My condition has reminded me of the importance of taking care of myself and prioritizing my health. I haven’t been the best at that. Especially when life gets busy. Without our well-being being taken care of. It will impact our careers, work, and personal lives. So let’s not take it for granted. I’m so thankful for my supportive family (shoutout to my amazing wife!) and the dedicated medical professionals who’ve guided me through this journey.

The Unseen Battle

The thing with this disease is that it’s often invisible to others. But those who experience it firsthand truly know its horrible impact. Let’s remember that many people around us might be dealing with similar challenges, and being compassionate and understanding goes a long way.

Wrapping up

Even though living with Cogan’s syndrome has been a challenge. I’m standing stronger and optimistic about the future of my condition. With the help and support of God, my family, and the medical team. I will hopefully get back to my full self prior to Cogan’s.

I hope that by sharing my story. I can inspire you to find strength in uncertain times and appreciate the importance of your health and well-being.

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