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

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…

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

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 seriously complicates the role money plays in our lives.

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…

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.

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.

…

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

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…

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

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…

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

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?

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…