Finding Hope in Chronic Illness: a day in the life of Trigeminal Neuralgia

Chronic illness has become more prevalent in our world. Many of these illnesses are invisible to those around you. While the pain can be unbearable at times, there is hope to be found.

I hate to admit it, but I’ve spent too much time lately pining away. For a different season. A different set of circumstances. A different life.

It’s been seven years since I first heard the words “Trigeminal Neuralgia.” Two little words that have forever changed who I am. Technically speaking, it’s a disorder of the fifth cranial nerve, which at least for me results in constant aching, burning, raw pain overlapped by occasional shock-like electrical pain in the right side of my face. You know when you were little and had been playing in the snow and came inside to warm up by putting your freezing hands under hot water? Yeah, that. Throw in some icepicks and electrical activity, and you’ve got Trigeminal Neuralgia (TN).

When I was first diagnosed, I hadn’t slept much for months and had taken so much Advil I could have solely kept the company in business. Come to find out, pain meds (over the counter or prescription) don’t work well for TN. Over the years, I tried many other medications to no avail. So I just learned to live with and through the pain. 

I didn’t realize it at the time of diagnosis, but TN tends to be a progressive disorder. What started out as facial pain has slowly come to include severe ice pick type episodes in my right eye, along with intense headaches due to nerve damage. Along the way, I’ve collected other diagnoses, presumably because my body is so worn out from chronic pain (although I’m working with a new doctor to consider other causes). These usually manifest in pain, fatigue, and random “weird” symptoms. 

A few days ago, I was lying on my couch with a massive headache, nausea, and fever: payment for the ten minutes I chose to spend sitting in the hot Texas sun. Feeling time slipping through my fingers. Missing out on activities, plans, and even the mundane errands and to-do lists I used to dread. Wishing I could keep up with my friends who don’t struggle with health issues. Longing for my old body, the one that felt like home. Wondering if it’s gone forever. If I’ll ever feel like “me” again.

I long to run and move and play without having to worry about chronic pain and bizarre symptoms. To once again work in the career path I love. To add value to the world and contribute something worthwhile. It’s hard to feel worthy when I’m spending time trapped in my own personal prison of the couch. More often, at least lately, I feel exhausted, frustrated, lonely, and small.

But then I’m reminded. It isn’t what we do that makes us worthy and gives us value. It’s who we are. Because of who Jesus is. Created and intimately known by the One who wove together every part of us. 

Chosen. Named. Known. Held. Loved.

So I’m committing once again to believe life counts for what is, not for what it does. To love my actual life. The one I’m actually living. Right here. Right now. Today.

It’s often messy. Sometimes complicated. And usually hard. But it’s mine. The path God has chosen for me to walk. However painful, it’s a gift. All of it. And I want to receive it with gratitude and open hands. Knowing deep in my soul that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint.