Editor’s Note: FII’s #MoodOfTheMonth for October, 2021 is Navigating Complex Emotions. We invite submissions on coping with complicated feelings, throughout this month. If you’d like to contribute, kindly email your articles to sukanya@feminisminindia.com
For most of us, 2020 was the year that rocked our foundations due to the pandemic. But for me, it was 2021. I am comorbid, and after months of dodging the virus with seeming over-cautiousness, I ended up falling prey to it in April 2021. Post multiple rounds of steroid IVs, I recovered from COVID, but ended up developing a chronic condition called Topical Steroid Withdrawal, where one’s body has rapidly worsening and spreading skin rash, along with a host of other symptoms like insomnia, swollen lymph nodes, fatigue, a deep insatiable itch, open wounds and hair loss, among many others. Now for the past 6 months, I have been home-bound, experiencing all these symptoms over the expanses of my body.
The world of chronic illness is an abyss I never thought I’d be plunged into, with its lowest lows engulfing my mental health throughout the course of these months. As I couldn’t stop scratching and breaking open my skin when an itch decided to take over my body, I stayed aware of the repercussions- the body dysmorphia as I saw an unrecognisable body after the bleeding cuts, the pain of losing my body image, and most of all, the anxiety of knowing that my body would grapple with exhaustion as it tried to mend itself together after. I could never function like most 20-somethings seemed to around me – productive, socialising and living their best life.
Being in final year of law school didn’t help, as most other students seemed to see the pandemic as a time to be even more productive in the hyper-competitive and capitalist field of law. Even while I was able-bodied, I always critiqued the capitalist machinery, but now, I truly felt the intersectional impact of how exploitative it is, and how much the scales are tipped in the favour of some.
Utility is the biggest metric here, but it is especially problematic as the world is further constructed to ease the functionality and utility of the able-bodied. In a world where access to public spaces, transport, colleges and work places among everything else, is created without considering any marginalised community’s requirements, least of all the disabled and chronically ill, with a host of special needs, we are bound to be isolated, and most of all feel rage, not just because of our symptoms and illness, but also because of how the world pushes us further behind.
Dignity in demanding for my special needs to be met. I want dignity in asking for more than the bare minimum, that was never enough to sustain meaningful relationships anyway, but now even more so, as I deserve to have these become my spaces of added comfort in the otherwise exhausting experience I go through. Dignity is rarely afforded to those of us with chronic illness and disabilities, and in asking for it, we often are termed as difficult, demanding or unreasonable
No clean and accessible public restrooms to dress our wounds when required, lack of clean and dusted spaces for the safety of the immunocompromised, social ignorance around the host of needs of the disabled and neurodivergent are taxing to say put it mildly. Office and educational structures don’t allow us adequate and timely breaks for rest and work according to our body capacities, among many other lacunae that leave me feeling a palpable rage every time I realise how the world isn’t constructed for me.
Despite these structural shortcomings, while the able bodied and privileged rush to get back to normalcy, I can’t help but look at my body, and ask for it to rush itself in its process of healing, for happiness feels like it is miles away. One of the most emotionally draining parts of living with this chronic illness is the anxiety of not knowing how long it would take to get manageable, or if it even would ever be, and if I could ever return to the ordinary life of a 22 year old.
Also read: Loving My Dysfunctional Body: Lessons In Self Love After A Decade Of Self-Loathing
It also has dented my identity – that of a straight student, debater, dancer, someone who enjoyed teaching and social work, and a slight chin-up certainty that I have a world of meaningful work, with little struggle ahead of me. I now question how we all construct our identities and self image, and how much of it wouldn’t be the way it is within the capitalist framework of our life. Whether our ability to do more and better would ever be the core of who we see ourselves as, and how much we grow and learn everyday.
I feel sucked into deeper despair as the most mundane forms of escape are inaccessible to my body now. Comfort foods are gone. My permissible diet is reduced practically to a quarter of what it used to be. Food is now fuel and medicine. It also means no brunches with friends to decompress, or meals outside of what I can cook for myself. No more do I have the ability to waltz around the quaint spaces of my city or take little walks around nature that help me feel grounded, only to have me forcibly sit with all the difficult emotions and coming to terms with where my body is at.
I think guilt overcomes me whenever I delve into the emotional experiences of my illness – the guilt of occupying space with discourse, when my illness isn’t life threatening or definitely something I will live with forever. But I do realise that these emotions are not just the outcome of the loss of some of my potentialities, but also a problematic sense of etiquette instilled through the system we live in, that barely makes room for tough conversations around discomfort and pain, let alone pain that carries over months, years or lifetimes
Only two things get me through days of weeping, bleeding skin and sleepless nights. First is the environment of comfort my friends and family try to create in small ways. As my appearance keeps going farther from recognition of how I saw myself, friends and family bring a familiarity to my old self that I couldn’t find looking into mirrors. They remind of the fact that I have value even outside the productive capitalist process, in cultivating meaning in the lives of those I care about.
It may seem like a little thing for those who have a lot going for them, but in checking in, sharing recommendations of shows and movies, and just calling to share their life arcs with me, they relieve me of one of my biggest anxieties – of not being valued or relevant anymore. At the same time though, some relationships also add to my emotional exhaustion. These are relationships that cannot withstand the exercise of my dignity.
Dignity in demanding for my special needs to be met. I want dignity in asking for more than the bare minimum, that was never enough to sustain meaningful relationships anyway, but now even more so, as I deserve to have these become my spaces of added comfort in the otherwise exhausting experience I go through. Dignity is rarely afforded to those of us with chronic illness and disabilities, and in asking for it, we often are termed as difficult, demanding or unreasonable. But we must continue to do so, as demanding dignity, along with care and rest, is the biggest exercise of our personhood as chronically ill and disabled folks.
The second thing that keeps me going is consuming media and revisiting some of my interests. Taking in stories across timelines and lands make me feel less stuck in my own space, re-learning the languages I had started learning ages ago, dabbling in art and writing, make me alive to the fact that I am not just my illness.
Chronic illness morphs our identity to feel like we are just our illness, but in delving into different aspects of our personhood, we can make room to live like the complex and whole persons we are, while still catering to the needs of our body.
Lastly, I think guilt overcomes me whenever I delve into the emotional experiences of my illness – the guilt of occupying space with discourse, when my illness isn’t life threatening or definitely something I will live with forever. But I do realise that these emotions are not just the outcome of the loss of some of my potentialities, but also a problematic sense of etiquette instilled through the system we live in, that barely makes room for tough conversations around discomfort and pain, let alone pain that carries over months, years or lifetimes.
In acknowledging this experience, as well as speaking and writing about it also shifts the balance a little from guilt to catharsis.
Also read: Self Love Even When It Seems Impossible
Mallika is a law student, and self-avowed Jill of many trades. She is a dancer, ex-varsity debater and is perpetually analysing art and life intersectionally. She can be found in the real world consuming cinema in her living room, or virtually on Instagram attempting to write poetry and structural critiques through personal stories and prose
