One in a Million can be quite lonely

The story of Priyanka

According to Google, the furry, adorable koala sleeps anywhere between 20-22 hours a day for survival, making it the sleepiest animal in the world. Apparently, it’s also the species I relate to the most on planet Earth.

February 17, 2024 marked 9 years of my rather adventurous and sometimes hilarious tryst with an ‘undiagnosable’ health issue. It was only towards the end of last year that I got a proper diagnosis. The reason it took so long is because it is a rare disorder called Kleine Levin Syndrome – a heavily fatigued, sleep-inducing condition that affects probably one in a million. For someone who doesn’t like the idea of labels, this “label”/diagnosis changed everything for me.

Through all those years, and even today, all I’ve wanted was not an immediate cure or some superdrug or someone to tell me I was just in the wrong simulation and everything was going to be okay. Nope, none of that. All I wanted was to come across at least one person going through something remotely similar to know what it feels like and how they cope.

Finally after finding out that there’s a community out there – however small it may be – of people going through something similar, I was better equipped to ask the right questions, look for the right help and move in what feels like (at least to me) the right direction. Although I am grateful for having seen some light, I am also grateful for the dark days. Because I learnt to be my own light during that phase, and learnt the importance of holding on very tightly – just like a koala holding on to the Eucalyptus branch – to all the good the world had to offer – love, kindness, hope and most importantly the people who helped me through.

I may be a long way from beating this setback, but if there is anything I have learnt along the way, it is this – it is important to talk about your condition. People often advise us against it, for good and bad reasons, but mostly because there is a sense of shame attached to being different from the rest. I did spend a good amount of time trying to hide it as well, but I couldn’t do it for too long. Now I wish I hadn’t listened to any of those external voices. Shame is probably the most useless thing to hold on to. It doesn’t protect you from the big, scary world. If anything, it only holds you back. I hope we all move towards a kinder world where we greet people with curiosity, rather than judgement, and make everyone feel safe enough to share their stories.

Today, while dealing with everything this sleep disorder throws at me, I am also happy to share that I still have enough energy to work towards my dreams and goals. While having a rare disorder has certainly shaped me, I’d like to believe that it hasn’t defined me, because I am more than my diagnosis. To anyone out there who is reading this, and dealing with your own personal struggles, I hope things do get better and that you always have the strength to keep fighting, one day at a time.