Getting over my romance novel prejudices, and embracing what those love stories could teach me about writing and radical self-acceptance.

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Photo by Brigitte Tohm on Unsplash

When I was young — probably around 12 years old — my father caught me in the romance aisle at the bookstore. I had grabbed a novel full of warriors and wizards from the fantasy section and plopped down onto the gray carpet, happily turning pages, not realizing that I was facing an assortment of covers displaying buxom blondes leaning back into the arms of Fabio-esque heroes.

When I realized where I was, I cringed. My father laughed at me and, when we got home, teased me in front of my mom. …


Seeking the opinion of another medical expert can cut deeper than your initial diagnosis.

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Photo by Anthony Tran on Unsplash

At my last appointment with my neurologist, I sat and listened as she said what I imagine to be one of the most vulnerable, frustrating, and honest things a physician can say to a patient.

I’m doing everything I can for you,” she said. “But you’re not making the progress I hoped you would at this point. I think it’s time to consult with a neurosurgeon.

Alarm bells rang in my ears and I felt a rush of heat envelop my body. Since my diagnosis with trigeminal neuralgia (TN), I’ve had numerous conversations with my neurologist about my symptoms, medications, alternative treatments, and research. She knows how I feel about the surgical interventions available for TN, so it was no small thing to hear her say that it may be time to speak to a surgeon. …


Finally coming to terms with what it means to be defined by illness and the dangers of false equivalence.

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Photo by maxime caron on Unsplash

Last week, I read this quote on This Thing They Call Recovery’s Instagram page:

“I am defined and limited by my chronic illness, but it is not the total sum of who I am.”

I understand what it means to be limited by my chronic illness: I am outspoken about learning how to work within your limitations to live a full life beyond illness.

But until reading this quote, I didn’t immediately understand what it means to be defined by my chronic illness and how that is separate from recognizing that it isn’t the totality of who I am. …


Chronic illness seriously complicates the role money plays in our lives.

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Photo by Raychan on Unsplash

In my July post, “Reimagine Work,” I wrote the following:

“A 2019 study noted that approximately 530,000 bankruptcies are filed annually in the U.S. because of “debt accrued due to a medical illness.” That is almost 4% of the U.S. chronic illness population.”

It is no secret that people in the U.S. are crushed by gargantuan healthcare costs. Knowing these costs — even if you are fortunate to have insurance — makes people think twice about dialing 9–1–1 for an ambulance or scheduling a doctor’s appointment when a new symptom emerges. …


In honor of Trigeminal Neuralgia Awareness Day on October 7th, it’s my responsibility to use my voice to raise awareness, understanding, and empathy for this condition that changed my life overnight.

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Photo by mukul kumar on Unsplash

This coming Wednesday is Trigeminal Neuralgia (TN) Awareness Day. Before 2017, I had never heard of TN, forget considering the possibility of being diagnosed with it. But the day of my TN onset instantly granted me admission into an exclusive community for whom October 7th would no longer be just another day. It is a day that straddles the blurred lines between pain, frustration, grief, desperation, exhaustion, and hope.

Always hope. …


There are things I wish you could understand about living with chronic illness.

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Photo by Prateek Katyal on Unsplash

When I’m asked about my chronic illness, I become matter-of-fact. I defer to facts and data over my own experience and feelings.

When I’m asked about my chronic illness, I say that trigeminal neuralgia (TN) is a rare chronic facial nerve pain condition. I say that there is no direct treatment or cure. I say that its common medical treatments are meant to treat other neurological conditions, but that these medications don’t completely disappear the pain. I say that the side effects can be intense.

When I’m asked about my chronic illness, there are times when I feel like I’m still not understood. Being in constant pain is inconceivable enough that I can often feel my audience’s discomfort and suspicion. Unless you experience or even witness it, it’s hard to explain what TN — or any other chronic condition — does to the body and spirit. …


Chronic illness sharpened my understanding of ableism. But until recently, I didn’t know the degree to which I had internalized ableist narratives.

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Photo by Ahmet Muhsinoglu on Unsplash

Last month, while watching to an IGTV interview between chronic illness advocates Karolina Chorvath and Nikita Chopra, I heard the term “internalized ableism” for probably only the second or third time in my life. I knew about ableism — discrimination against people living with disabilities — since I was a young adult, but it didn’t occur to me how and why it could become internalized.

When I was diagnosed with chronic illness, I fell through the rabbit-hole and was introduced to a whole new language and experience I previously had nothing more than an academic or political awareness of. But still, after my diagnosis of trigeminal neuralgia, I had no understanding of how and why ableism can be internalized. …


A letter of apology — and appreciation — on the third anniversary of my onset of trigeminal neuralgia.

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Photo by JOSHUA COLEMAN on Unsplash

To my chronically ill Body,

For too long, my love for you was only skin deep. I saw you purely as an aesthetic object — a poor one at that — and you were valued only as far as my self-criticism allowed.

I am ashamed to say that for most of my life, I haven’t been kind to you. I have not always given you the love you deserve. …


What does it mean to feel betrayed by your body when you live with chronic illness?

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Photo by Aditya Ali on Unsplash

The person I was before my diagnosis with trigeminal neuralgia (TN) feels like a version of myself from a parallel universe. That version of myself is fearless and tireless; she is disciplined and hyper-productive. She never stops. That portrait is in sharp contrast to who I am now — a woman who is no less disciplined or ambitious, but who lives with constant, disruptive pain. A woman in need of a different pace.

The bridge between who I was “before” and who I am “after” is paved with my fragmented self-esteem. Because chronic illness breaks down your confidence. It dissolves who you believe you are and challenges your sense of self, and you are then forced to recreate yourself into someone wholly unexpected. …


Who would we be without books — and where we experience them?

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Photo by Jason Leung on Unsplash

Last month, my local Barnes & Noble shut its doors for good. My brother photographed and sent me the notice taped to its front door. Grudgingly, I had known this would happen; it was only a matter of time. I have watched so many bookstores shutter their doors over the past decade. But I held on fast and hard to hope: all of my favorite places surely wouldn’t fall victim to internet pricing.

But they have. And now, all I’m left with are ghosts of places that have been my places of worship since I was a child. …

About

Nisha Kumar Kulkarni

freelance writer & editor | writing coach | chronic illness advocate

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