When sudden, unexplainable symptoms continued to intensify, Presha Kardile knew something was wrong. What followed was a year of constant ER visits, normal bloodwork, and no medical explanation for why she was so sick.
Following an antibody test, it was eventually revealed that Presha lives with mixed connective tissue disease (MCTD), with a strong clinical manifestation of lupus. MCTD is a serious rheumatic illness that affects multiple parts of the body, and presents with signs and symptoms of other autoimmune diseases.
The difficulty of living with her condition and searching for answers left her grieving the loss of her former life. Eventually, it also led to a place of deep reflection. In her thoughtful essay below, Presha explores the bright lights of acceptance and gratitude, and how they changed the way she sees her body and her life with chronic illness.
Some days make me aware of every breath, every movement, every blink of my eyes, and every single inch of my body because of the effort it takes to simply be. Ironically, today, those are the same moments that make me feel grateful to be who I am, and grateful for how my body gives itself to me so selflessly.
While I was penning down my initial thoughts pondering on how to best approach this topic, I could feel the side of my right thumb throbbing painfully. An accidental brush of my leg against the corner of the couch reminded me of the sleepy, or rather dormant, pain that always accompanies days like these.
Days like these.. stretched periodically into weeks or months and even the better part of a whole year, eventually become the new normal of human experience. Being diagnosed with an autoimmune disease at the prime of my life was definitely not something that I had factored in. I was a young woman with dreams of traveling the world and no ceiling on her ambitions. It also did not occur to me how embarrassingly ill-prepared the world and its institutions are. Rather than someone with a chronic health condition living life on their own terms, they are forced to dive in and out of the accepted flow of ‘normal’ life.
“I was pressured, nonverbally and relentlessly, to reach a state of normalcy that was unattainable.”
So, how does a gym-going state-level basketball athlete, who signs up for every club and activity, runs for leadership positions, and somehow also finds the time to be a part of a dance group, react to adopting a new normal? How does she react to taking as many medications as her father’s sixty year-old self while struggling to sit upright, fold her legs, or get up to fetch a glass of water? Not kindly.
My chronic illness was never ever acknowledged out loud within my familial sphere. It was something that had reared its ugly fangs temporarily and would ‘go away’ one day, once we had conquered it with a lot of unsolicited advice and medications. It was only a matter of time.. apparently.
While originally from a town called Nashik in the state of Maharashtra, India, I had spent close to eight years in the United States attending college and working, away from everything that I had ever known. Yet I had never felt more isolated or out of my depth than when I was living back in Nashik, back in familiar surroundings, with a chronic illness. I was pressured, nonverbally and relentlessly, to reach a state of normalcy that was unattainable.
It certainly did not help much when I realized, with every passing day, that day-to-day life was not designed to accommodate people like me. To top it off, deemed to be of marriageable age, there was an undercurrent of urgency that came along with every new treatment that I was subjected to, in the hope that I would soon be back to “normal.” It came to a point where I was unable to decide if my mental state was causing me more anguish than the autoimmune disease itself.
“The key was to be okay.. with not being okay.”
After several years of denial, dramatic manifestations of angst, and overall feeling miserable for myself, I had a profound realization. The realization was in no way groundbreaking, but it did shift my perspective for the better and save me from myself in innumerable ways. The key was to be okay.. with not being okay. Easier said than done, right?
The beauty of a chronic illness is that it forces you to eventually acknowledge, then tolerate, and dare I say, gradually embrace the multitude of everyday setbacks and find something in each day that is worth being grateful for. This is important because if you cannot accept your own limitations with compassion, you cannot hope that the world will, either. Change always starts from within and then slowly, through your own mindful actions, begins to manifest itself in the outer world.
For me, it all started with a passionate blog post I wrote in the month of March, which happens to be World Autoimmune Awareness Month. This simple act of accepting myself in my current state of being not only helped me cope mentally, but also made me want to help those around me who are silently struggling as well.
It’s hilarious how, a lifetime ago, thirteen-year-old Presha wanted to be anybody else but who she was physically. She wanted to be one of those girls who was not looked at like she was was committing a crime by occupying a body this size, this dark, this fat, this tall.. this and that. How meaningless all of that seems now. The embarrassment and hesitancy, the worrying that I was too much, too big, too heavy, too tall, or too wide. Now, I look at my heavily-medicated, bloated self with blotchy skin and achy joints, and I could not be more in love with the woman I have grown to be.
“If this pain is inevitable, so is change.”
As devastating as this pandemic is, I finally feel like a part of the world once more. It feels like the world paused and, respectfully, made space for me and my body. Now, when I talk to people in everyday life, I can feel a similar tiredness and exhaustion reflected in their eyes, as they are in mine. Every smile and word of empathy has become more meaningful, with emotions that come from a place of understanding.
As I sit in my pajamas on a Saturday night typing out my notes with sore knees and tired eyes, the pressure of pretending to be “okay” slowly dissolves into the vast ocean of self-manufactured compassion and acceptance of life as it is in this moment.
The world still has a lot of catching up to do. It continues to be a place where anyone who does not fit into the standard, everyday systems of life is left behind, or has to put in double the effort to catch up in the race. If this pain is inevitable, so is change. My hope is that one day I feel as comfortable with navigating the world in my body, as I do with living in my body today.
But, for tonight, it is enough that I love who I am, and have found a way back to myself through all the suffering of the recent past.
Tomorrow.. is a new day with a new opportunity to be a catalyst for change, to speak and be heard, to debate and discuss, to embrace and let go, and to lead and be led.
But, for tonight, it is enough that I am.. breathing in the moment, grateful for this day and looking forward to a new tomorrow.
The views and opinions expressed are those of the author and do not necessarily reflect the views and opinions of the Global Autoimmune Institute. The experiences and health outcomes described in this article are unique to the author and do not serve as medical advice.
Interested in sharing your story of autoimmune disease or chronic illness? Head over to How to Tell Your Chronic Illness Story for prompts and tips!