Grief with IBD: Remember to Turn on the Light

By: Maalvika Bhuvansunder

Grief is a term generally associated with the loss of a loved one. In this scenario, the loved one is me. Grief for me was losing the person I used to be before my Crohn’s. I was always a happy and vibrant kid who would just never stop talking, never one to make plans beforehand, and was very flexible. I used to take life easy and would never overthink any scenario. I became a completely different person, to be precise, the exact opposite of who I was before. I’m always overthinking, moody, and can not function without a plan. It felt that instead of being a part of my life, Crohn's became my life. Activities that used to bring me happiness like dancing and reading, were no longer of interest to me. I used to love going out with family and friends, but the thought of going out scared me. I felt the safest inside my house, having minimum interaction with the outside world. This “safety”, however, did not bring me any happiness. I was constantly miserable even when I was not in a flare. My mood started reflecting on my behavior with others. I was constantly snapping at my family and getting angry for no reason. I became this person that I could not recognize. I remember distancing myself from my friends and internally blaming them for the distance.  

After a struggle of three years, I reached a short-term remission in 2019. The timing could not have been any better, as I was relocating to Manchester to pursue my Master's. For my Master's thesis, I was researching grief and suicide bereavement. That is when I had my eureka moment! The themes that emerged from the research were isolation, anger, guilt, and loss of interest in activities that once used to bring them happiness. During this research I realized these were the exact emotions I had felt. Upon self-reflection, it made sense that, in a way, what I experienced was a type of grief. Grieving the girl that used to get happy at the smallest of things, the one who used to take life as a beautiful journey, and the girl who never used to get angry. I was using unhealthy coping strategies to make up for the grief I felt from losing the person I was before.  Along with grieving the past me, I was grieving the future. All these questions of will I be able to work, find someone who accepts my condition, and a lot of other things. I remembered one of my research participants expressing how much she lost in the present day by worrying about her past and future; it was completely futile. This type of grief is something I am sure many individuals with a life-long illness might feel but would not have realized what it meant.

“Happiness can be found, even in the darkest of times, if one only remembers to turn on the light.”
— Albus Dumbledore, 'Harry Potter And The Prisoner Of Azkaban'

At that particular moment, this quote from Harry Potter resonated with me: “Happiness can be found, even in the darkest of times, if one only remembers to turn on the light.” I was so focused on hating my situation that I forgot to switch on the light in my life, to appreciate those that stuck by me. Crohn's may have played a part in this internalized grief of mine, but it was me that refused to see the good things. Yes, I am no longer the girl I used to be; however, Crohn's made me a much more resilient and empathetic individual. It instilled in me the sense of being nonjudgemental and understanding others struggles. I started to appreciate my body for working its best to survive despite the condition. I was grateful for my family and friends that stuck by me despite my infuriating behavior. It was an eye-opening moment for me.

I made a promise to myself to start doing the things that once bought me happiness, no matter how small they are. We cannot change the past, nor can we predict the future. Why waste away our present amidst this?! It is very natural to grieve the things we lost due to our illness and what we think we might miss out in the future. At such times, I stand in my balcony and remember to switch on the lights in my present life and find happiness in the smallest moments. When we have an illness that takes a huge toll on our body, we must make sure that on the days we do feel okay to make the most of it.