By Shambhavi, Alagille syndrome, India, February 9, 2021
My name is Shambhavi from India and I am living with Alagille syndrome.
I love to read, drink tea, take walks, travel, write, wiggle about to music. I love spending time with my friends. My favourite activity is listening to jazz, drinking tea and reading a book, preferably in a café, but I do this at home too!
Many things bring me joy! The tea brewing. The smell of fresh bread. A blue sky. A lovely green walk. Beautiful torrential rainfall. A cold, cold morning. Fuzzy socks. Dogs – anything they do. My mom’s hugs. The way the pen or marker glides on a piece of paper when I journal.
My rare disease affects me in so many little ways. I live with chronic pain and fatigue, so some of the ways that affects me are:
_ My hands are pretty weak, so I have a hard time lifting even the smallest things. My phone for instance, lifting and holding it causes fatigue and pain in my wrist muscles.
_ I get breathless and tired as I do physical activity, so I walk slower and do my work at a slower pace.
_ I don’t like bright lights because they make me feel tired and induce headaches. Large crowds have the same effect.
But, my rare disease has broadened my horizons and increased my capacity to empathise and reach out to people. It has also made me a thinking, introspective human being that is constantly processing and learning from life experiences. I truly feel each year, I become a better version of myself than the year before.
My family and friends support me, I’ve built some good friendships over time. But this year, the COVID-19 pandemic, has really shown me that I am capable of having my own back. I found this to be very empowering because for years I never thought I would be able to take care of myself, ask for help and direct the course of my life. Whilst my family and friends form the support system I have, I just want to put out there that this year has taught me that I can be my own support system, if all else fails.