The Complicated Reality of a Diagnosis
There’s comfort in giving the pain a name, but that doesn’t fix it
In 2019, I developed a number of health issues that put me on a path to discovering that I have a potentially chronic pain disorder. Towards the end of the year, I had several great, pain free weeks that dragged out into nearly a month and a half. It felt like the light at the end of a long, dark tunnel.
But then, in spite of my following the rules, taking my medication, doing what my doctor and I had discussed, my pain flared up again.
As I move through this space of pain once again, I’m reflecting on the complicated reality of receiving a diagnosis. How it both frees you from a certain type of worry and brings a new set of challenges to your identity and sense of what “healthy” feels like.
In early November of 2019, I visited my neurologist for a long awaited follow-up appointment, the theme of which was basically “Okay, so we know I don’t have multiple sclerosis or a brain tumor, so what now?”
If you’ve never had a doctor show you pictures of your brain at 9am, let me tell you I don’t recommend it.
Back in college when I took Neuroscience, I always used to get this weird, fuzzy feeling whenever I looked at images of brains for too long. It always kind of freaked me out to think too hard about the thing inside my head that was making me think all of my me thoughts. So staring in the face of not just pictures of any brain, but my very own brain, was something before which I would have preferred more coffee.
Alas, it was not to be. The morning of my follow-up appointment, I dragged myself out of bed for my usual Friday morning routine of waking up at 4:30am so I could have a cup of coffee and sit awhile before going to the 6:15am “Breakfast of Champions” yoga class.
The morning brought not only our first below-30 degree day of the year, it also brought the first snow. I said not a few curse words under my breath as I warmed up the car and drove to the studio in the snow before the sun was even up.
I’d had a string of bad days, pain wise, and knew better than to expect much of anything to change after my appointment later today. But, braving my way back into exercise had lead to the counter intuitive discovery that bad pain days could often be reduced or even eliminated altogether with a little bit of yoga or going for a run. It made no sense to me, dragging my exhausted butt and my “shocking yourself repeatedly is totally normal” brain to yoga, and yet within five minutes of the start of class I was nearly in happy tears because the stabs had retreated entirely.
After class, I helped myself to a latte at the local coffee shop down the street because, being the person I am, I was actually at risk of arriving too early for a 9am doctor’s appointment. Ahh, morning people.
The light stabs at the back of my skull re-emerged on the drive, as if wanting to keep me company for this chat with my neurologist. I pulled into the parking lot and walked briskly past several older, less mobile folks. Unlike most of the patients making their way into the Spine Center, I took the stairs rather than the elevator. Maybe I was a little bit showing off, telling myself I was healthier than many, lucky to be so. Mostly, I knew that the more I moved, the less likely I was to experience sudden shocks at the base of my skull.
My neurologist was as calming a presence as I remembered, even if he made me look at my own brain. In truth, I wasn’t really sure why he felt the need to share the photos. We both already knew that my scans had come back normal, so pointing out all the normal parts of my apparently “good sized” brain didn’t seem entirely necessary.
He then also went over the results of my bloodwork, which were also normal.
“So,” he said, “This is occipital neuralgia.”
There it was. The little pair of words we’d been tossing around for a while, now feeling like a truly confirmed diagnosis. I’d done some reading online and came across the fact that ON typically heals in three months, so I’d half expected a new series of tests when I revealed that while I was mentally and physically doing a hell of a lot better, my skull still enjoyed throwing periodic pain parties.
But no. As it turns out, contrary to what I read online, ON doesn’t follow any sort of predictable trajectory. It just, to paraphrase my neurologist, happens to people sometimes and no one really knows why. Never mind that it’s more common in people with a migraine history (which I do not have). Just one of the lucky ones who can go most of her life with no pain and then BAM!
My questions were these: is this going to heal, or is this for life? And what should I track, look out for in terms of triggers?
The answers were: For some people, it does, And for others, it’s something they have to deal with long term. There’s no real way to tell what it will be in your case, except time. Avoid artificial sweeteners (goodbye, love affair with Diet Coke), try to get more exercise, and maybe keep a food diary to identify other potential triggers.
It was pretty much what I expected, but when he walked me out to the receptionist to schedule a follow-up for nerve blocks if it came to that, he told her casually “This is Amanda. She has occipital neuralgia.”
Of all the labels people have put after “This is Amanda” in my 27 years (she’s a straight-A student, she’s a College Bridge coordinator, she’s a grad student, she’s the… well, really long title of my current job), this wasn’t anything I’d ever anticipated being a piece of my identity. Yet, here I was being introduced with my name and a diagnosis right after it, plain as day.
Just like that, I was a person who had a thing. A pain disorder, one that very well might be as chronic as it is invisible. I have been learning, more and more, how frustrating it is to have a bad pain day and know that it isn’t fair to expect everyone to know I need them to be gentle with me, but feeling frustrated anyway because even if my pain is invisible, it very well does hurt.
These past few months, I’ve had to unlearn thinking a string of good days in a row necessarily means I’m cured. When I went through a full month without symptoms, I really felt that my days of wishing I could hold up a sign saying “sorry I’m not as friendly as normal, I am in pain” were done. When shocks at the base of my skull woke me up in the middle of the night on December 30th, it nearly broke me. How could this be, when I’d thought I was healing?
It made me realize I have to move into a space of accepting there might not be an “after” for this, that this might be my new normal. That the pain free days are beautiful, but there may be pain filled days in my future. That “chronic” is chronic, and the label I received in November may well be here to stay.
I’ve been putting all my yoga and mindfulness to the best use I can, trying to be present. It’s a sad sort of blessing that my recent pain flare finds me at the start of another yearly cycle of the January 30 Days of Yoga with Adriene.
As I’m called to my mat daily during the journey of HOME, I try to be grateful for the good days without lamenting that it doesn’t mean I’ll only ever have good days. When it’s a bad day, I breathe deep and I stretch and I remind myself that this, too, is temporary. There will be more good days, just as it seems there will be more bad ones.
I am angry, some days, that this rare and mostly unexplained pain disorder chose me and has altered my life in a hundred tiny ways over the span of a few months. And yet, when I roll out my mat and find myself gliding through postures pain free, I remember I am lucky. There were days when we thought this might be something worse. My doctor reminded me that, while inconvenient, ON isn’t a sign of anything degenerative or more deeply wrong. It’s just random nerve pain for random reasons because sometimes, life is just random.
Yes, I have a diagnosis that pretty much still means “we don’t really know anything, so good luck.” But I also have a diagnosis that means I still get to do the things I love, like yoga, and teaching, and running, and playing Dungeons and Dragons, and hanging out with my boyfriend, and being a success coach.
Maybe it’s a little bit annoying how much I try to turn this into something positive, or at least something that isn’t pointless suck for no reason, but it’s just who I am. I’ve got to make this into something I can learn to carry, because it is so very easy to want to give up when I lie my head on the pillow and my damn occipital nerves decide they don’t really feel like being touched at the moment, even by something as soft as a pillow, thank you very much.
My doctor and I agreed that, if I keep on this path of more bad days than good, the nerve block shot won’t be necessary. He made the appointment for me anyway, in case things take a turn for the worse.
I don’t like the idea of February finding me in so much pain that I’m willing to have someone give me a shot at the back of my skull, but I understand that I just can’t know what my future will bring. Hopefully, my medication and exercising and avoiding my old true love, Diet Coke, will help keep the pain as livable as it’s been this past month. Hopefully my good days continue to outweigh my bad, and I learn to carry this pain.
This year, I plan to train for the half-marathon that 2019 took away from me. I’m relearning how to run, learning how to get through the days where my brain stabs itself with such ferocity that all I want to do is sleep so I don’t have to deal with the pain. I don’t want to be one of those people who preaches the gospel that yoga and exercise can cure everything, because they can’t. It just so happens that, for me, for this, they help.
One of the running bloggers I follow, Kelly Roberts, often offers up the running mantra of “I can do hard things.” It’s one of my favorites, something I mutter to myself on a trail run when the running interval falls on the uphill swing and I feel like my lungs are on fire. But now it serves me in my daily life, too, when I sit at my desk on what started as a good day and feel the first little shock that takes me from a pain free day to painful one in an instant. “I can do hard things,” I tell the shocks at the base of my skull.
So, here I am, integrating another label into the composite of things that make me who I am: Runner. Yogi. Pisces. Hufflepuff. Person with occipital neuralgia.
I’m new in the world of chronic pain, less than a year into this journey. I’ve got it better than many, and worse than some, and I’m taking it day by day by day.
Thanks for reading!
I wrote about the ongoing experience of living with my chronic pain here, if you’re curious to know how it’s been since the diagnosis.