Chronic Illness Isn't the Center of My Life
Whenever I find myself talking to someone about living with trigeminal neuralgia (TN), I wonder if I talk about it too much. Even if I’m directly asked about my health, I worry that my conversation partner will get bored and find me boring. I worry that my truth is alienating them—because though TN is one of the most significant experiences of my life, it isn't necessarily relatable to theirs.
My concern about how much TN has colored my life extends well beyond my relationships. I worry if I am focusing on my chronic illness too much and, in doing so, if I’m attracting more health woes in the future. It may seem ridiculous, but I’m a firm believer that what we put our attention on persists.
And that’s why I’m determined to not make chronic illness the center of my life.
But even if it isn’t the center, it affects every part of my life. There isn’t a single facet of my life that hasn’t been touched by my condition, which can be a hard pill to swallow (pun totally intended).
The hard stuff
I don’t want to wax poetic about how TN has affected me physically. I’ve already done that and it is obvious. The physical toll is deep and constant, and my daily challenge is learning how to live with the intricacies and nuances of chronic pain, side effects, and bone-deep fatigue.
It also goes without saying that TN has affected my psyche. Living with chronic illness can be intensely lonely and a consistent aggressor to my sense of self. There are psychological symptoms—like anxiety and depression—that are almost easier to point to than how my confidence and self-image have become blurry at the lines.
Chronic illness assaults the body and the mind in peculiar ways, but both the body and the mind are resilient. Even through my most acute pain cycles, I am aware of my body’s wisdom and how it is fighting for vitality. My mind is a warrior too—even through my lowest moments, it fights for equanimity, coaxing me to focus on the good stuff that hovers just at the periphery.
A gift
When I say chronic illness affects every area of my life, I don’t mean that it has only affected my life negatively. To say that would be dishonest.
If I allow myself to ask the question whether I have benefitted from my condition in any way—the real talk answer is: yes, I have. TN has given me the gift of discernment: of valuing my time, effort, energy, and self as a whole.
All of these have always been finite and precious, but I learned to appreciate them differently after my diagnosis.
It is from this appreciation that I decided to simplify my life as much as possible and dedicate myself to the things that truly matter to me.
Things like writing.
Becoming the writer I want to be
All I’ve ever wanted to do in my life is to write. It seems trite to say it’s my passion, but it is. And for a good portion of my adult life, for a number of complicated reasons, I didn’t embrace my passion wholeheartedly.
My diagnosis changed that.
Chronic illness has this innate ability to instantly upend your perspective and I needed a way to make sense of that.
So I did what comes most naturally to me: I wrote. I started quietly, by ripping up the formula I had mixed for my newsletter and paring back to the essential. I started to use writing to give myself the encouragement I desperately needed. And I had a feeling that others—whether or not they were healthy—needed that too.
My newsletter gave me the confidence to dive into freelance writing and find a gig that helped me reclaim my creative confidence in a more grounded, authentic, joyous way.
There was no more time, energy, or effort to waste. My condition affects me differently every single day, but I can count on it affecting me every single day. I couldn’t ignore this truth. I realized I had to choose better for myself and choosing better meant to write.
Write now
It has been 928 days since the onset of my TN. In that time, I have written a lot. I have published nearly 100 articles and blog posts. I have written about 130 newsletters. I have published two e-books. I have written more journal entries than I can count. And I have found the courage to finally get to work on a novel.
More than six months ago, I published “Living with the Suicide Disease.” That post is my most popular piece of writing ever. There are times when I find this ironic, that it took a change in my health status to become the writer I want to be. But then I think that this is the only way it could be: it’s only natural that one of the biggest turning-points in my life taught--and continues to teach—me about self-acceptance.
For the record, I’m intensely proud of writing that post. Not because of its popularity—which is definitely icing on the proverbial cupcake—but because I wrote it for myself, to make sense of how TN turned my life upside-down. Then I shared it with the tiny, precious hope that it would help raise awareness for an invisible disease, inspire people to be more kind and compassionate, and make someone feel less alone.
I’m also proud of that post because it is unapologetic. I have reread it a few times and though it is heartbreaking to see those words on the page, I see it as open acceptance that my post-diagnosis life is different, for obvious and more subtle reasons, and that’s okay.
This is about you
Chronic illness may change everything, but it doesn’t have to be the center of your life. I’m still learning that lesson every day. It will affect every area of your life, but your story doesn’t have to begin and end with your health status. You are so much more than your medical chart.
As hard as it is, as impossible as it may seem in your most painful moments, I want you to know that there is still good in your life. You may not always be able to see it and it may be especially hard to acknowledge how you may have benefitted from your illness, but those reasons do exist.
Perhaps you found greater tenderness in your relationships. Or you found a new way to love yourself.
Perhaps you have a new appreciation of your work in the world. Or you made the commitment to choose a different path.
Perhaps you started to practice more generosity and kindness. Or you discovered how you really want your days to feel.
Whatever they are, those gifts exist. Let them be the center of your life. Let them—not symptoms, side effects, and limitations—dictate your sense of self.
