Why I Write About Chronic Illness

Why I Write About Chronic Illness

Nisha Kulkarni
Chronic Illness & Pain

Next 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 lines between pain, frustration, desperation, exhaustion, and hope. 

To be diagnosed with a condition that is seemingly perpetual, rare, and without direct treatment or cure is beyond articulation. It insinuates itself into your life without invitation or warning so that you struggle with seeing yourself beyond a system of symptoms and side effects. 

After diagnosis, you have a rude awakening to a new life. 

Seeking information

My formal diagnosis of TN didn’t happen until about two weeks after its onset—which is, frankly, quite fast given that some people have to wait months, years, or even decades to understand what is happening to them. But the first suggestion that I have TN happened the night of my first pain attack by my father. It is thanks to my father’s experience and treasure trove of rare medical knowledge that he recognized what was happening to me. A series of succeeding examinations by my primary care physician (PCP) and neurologist, blood tests, and an MRI would confirm my father’s hypothesis.

I have tried to adequately describe what that first pain attack was like, but any words I use seem trite in the face of the experience itself. The best way I can make you understand what it was like is to say I didn’t sleep that night for the pain. It was relentless and beyond any scale I thought I understood. 

The next day, I was doing my best to conserve what energy I had so my body could try to withstand TN’s assault. After seeing my PCP that morning and carrying her tentative agreement with my father’s diagnosis home, I crawled into bed with my phone and did my first google search. 

I consumed everything I could find on TN. I read articles, blog posts, and dated medical papers. I watched whatever YouTube videos I could find, usually from research hospitals and dentists, some with brief patient accounts of their experience. Nothing I read or saw was particularly encouraging. Days later, when I sat in front of my neurologist, she acknowledged that so much of available online content on TN is terrifying, so she made me promise I would only consult credible sources and to not fall through the crackpot rabbit-hole.

Because I’m an excellent student, I took her words to heart and they did save me some anxiety. But the truth is that any life-changing diagnosis carries with it a clawing curiosity mixed with a spectrum of emotion. When I had weeks to sit with my diagnosis, grief trickled in—for what life was and an awareness that what could have been would radically change. 

My diagnosis is now three years old, but it wasn’t until last year that I fully acknowledged the roles despair and grief play in accepting a "new normal."

The great teacher

As I navigated my own research and conversations with my parents and doctors, I started building a language around my experience. I started with a scientific vocabulary, but I didn’t hear my private emotional and psychological language echoed around me. In those early months of my diagnosis, I didn’t know anyone with TN who could show me that I wasn’t alone with the difficult thoughts and feelings this condition inspires. 

It is only through that great teacher, experience, that I found the courage to step outside the bounds of traditional science to understand more. In a sense, the easiest part of my condition is the physical toll. Don’t get me wrong: this pain is brutal. I live with both constant pain and spontaneous pain shocks every day, both of which have raised my pain threshold, but both of which have also skewed my perception of “lesser" pain. But I can predict physical TN pain because it’s always present. 

The harder part of my condition is its toll on the heart and mind. This unpredictable effect feeds my physical pain. It’s only when I looked beyond traditional science and medicine to my own experience and how that is mirrored in the world—however rarely—that I started to understand TN and the true toll of chronic illness. 

Daring to trust my voice

TN has given me the kind of pain that brings me to my knees, but it has also given me a greater sense of purpose. It is because of TN that I have learned to work with my limitations with more patience, kindness, and compassion. Doing so has lead me to redesign my business so that I do less talking—one of the more offensive TN pain triggers—and more writing.

In fact, TN has given my passion for writing a greater purpose. I have learned to trust my voice enough to speak about my experience. It is both heartbreaking and cathartic to write about living with chronic illness, but I also feel it is my responsibility. 

This is really about you

I will not accept that because TN is a rare condition that I must be okay with a lack of new research into direct interventions or a cure. This research needs funding, and funding requires awareness and advocacy. 

I will not accept that because TN is a rare condition that I must play a guinea pig to a host of traditional and alternative treatments to figure what will work for me. It shouldn’t take endless trial-and-error for me to know how to best support my health and wellness. 

I will not accept that because TN is a rare condition, I must live with symptoms and side effects that diminish my quality of life. TN is not the center of my life, but it has adversely affected the quality of my life in some profound ways. 

I will not accept that because TN is a rare condition, there will not be enough information available to someone with this diagnosis or their loved one to make sense of what to do now. It isn’t okay that what is known about TN hasn’t significantly changed in veritable decades. There needs to be more current information—not just scientific data—about this condition. 

I will not accept that because TN is a rare condition, I must be subject to pity or skepticism over my experience. Nearly 50% of Americans live with at least one chronic condition; I am not the only one. Let’s show more kindness, compassion, and respect for different health experiences because more people than you realize are fighting invisible battles. 

I will not accept that because TN is a rare condition, not many people know about it. If it affects one person, that is one person too many. Let’s talk about it to elevate awareness. On that note, let’s normalize chronic illness—and disability—so that there is greater awareness for different health experiences. 

So that’s why I write about TN and chronic illness: to give voice to this experience so that you know that you will find a way to live through this. 

You are not alone. 

Learn more about TN

This isn’t an exhaustive list of resources on TN, but these are ones I have found the most helpful.

Money and Chronic Illness

Money and Chronic Illness
I'm Fine

I'm Fine