It’s Monday morning, almost 7 a.m., and I’m at the Mayo Clinic waiting for my name to be called for my first rheumatology appointment. I’ve had undiagnosed pain for almost three years; I still don’t know how to explain it in a couple of sentences, not in a way that will help others “get it.” But I’m starting to let go of that.
It started with a virus. I literally thought I was dying (minus the basic white-girl sentiment). I was bedridden for weeks. I had sores all over my gums that bled whenever I opened my mouth. I couldn’t eat or drink. I had migraines, sinus pressure, muscles aches, dizziness.
We all thought it was some version of the flu. We thought that I just needed to kick this to the curb: If I made it out alive, we figured, I’d be home free. I spent weeks in a blur of Netflix, chicken broth, and taking midterms from under my blankets.
After the third week, I finally felt like I was on the up and up, and my body was remembering the life it used to lead. I slowly started doing the things normal people do: walking to class, eating meals, staying awake for more than two hours at a time. But as I did, I also began to notice a strange soreness in my body. When I walked, my hips felt like they didn’t have as much room to move as they did before. I couldn’t reach behind my back to snap my bra off. The toilet suddenly seemed a lot farther down than it ever had before.
At first, I wrote it all off, telling myself: “I spent three weeks horizontal — of course my body feels a little off. It’s just remembering how to be a body!” Before the onset of the virus, I was teaching fitness classes around the clock and leading an insanely active, beautifully sweaty lifestyle. I knew that going from high energy levels to the sedentary lull I’d been in for weeks wasn’t easy emotionally, and I figured that my body needed time to catch up, too.
I could spend a long time detailing the intricacies of my decline — the good days and the bad days, the bizarre symptoms, the piles and piles and piles of meds and supplements and their oh-so-glamorous side effects. I’ll do a lot of that rehashing at the Mayo Clinic, where I’m partnering with a medical team to gather more information about what could be causing this chronic joint pain. I sought treatment at Mayo after going through an intense "fuck Western medicine" phase, followed by attempts at alternative treatments like acupuncture — and finding both routes ultimately disempowering. I decided to turn to what is known in the medical world as the place to go if you have a rare, complicated, or undiagnosed condition. I hope that here I can pick up the nuggets of wisdom that speak to me while also ditching the deeply entrenched idea in Western medicine of "fixing" the problem.
But I’m less interested in my physical pain than what’s going on beneath it. Early on in this experience, I realized that I wanted to examine not just my pain itself, but my own relationship to it.
I also found out relatively early on that most people think that’s a batshit crazy idea. The socially acceptable, appropriate, and sane way to relate to pain is to just want it gone. Case in point: Western medicine. Sales of prescription pain relievers quadrupled from 1999 to 2014. What’s interesting about this is that there’s been no significant change in the amount of pain reported by Americans during that time. I know this firsthand: Opioids, antidepressants, anti-inflammatories, steroids — you name it and I’ve been prescribed it, but nothing took away my pain. Instead, most of the drugs just created additional negative side effects.
For a long time, I didn't know how to leave a doctor’s appointment feeling okay about existing in my body. My illness progressed over time and no one could figure out what was going on. Doctors rolled their eyes and doggedly tried to fight my pain, rather than accepting it as a symptom or signal of something bigger. No one wanted to open it up and get curious about it. Doctors’ offices and hospitals overall felt aggressively pain-avoidant and totally out of alignment with my desire to be in relationship with and understand my experience of pain, despite how hard it was for me to accept.
Trust me: There are days when I wake up and wish for anything but this pain. I’m a 20-something who wants desperately not to hurt anymore, to just be able to walk with ease. But it takes a lot of energy to push away the pain (thank you, chronic fatigue). Instead of just fighting it, I am now trying to better understand the amount energy I need to expend on a daily basis — what drains me and what does not. I realized that instead of constantly battling my pain, I could meet it with curiosity.
Western medicine, and our Western culture more broadly, encourages us to do the opposite. And I've followed in that tradition in the past: I’ve rejected my illness. I’ve hated it. I’ve cried about how it isn’t fair and doesn’t make sense. The resisting and the rejecting and the hating exhausted me, but those moments were necessary. I needed to let all those feelings come up for air.
And then, eventually, I decided to take a hard look at my deeply held desire to get out of this pain. Had medication worked its magic, I wouldn't be writing this, but the truth is that it didn't, and I found that being in pain — being unable to move, even — brings you face to face with things you didn’t know were inside of you. Fear surfaced when I couldn’t do the things I’d always done with my body. Anxiety crept in when my to-do list got bigger and my capacity to tackle it dwindled. Anger was triggered by feeling trapped in my body and trapped by my circumstances. I soon discovered that a part of me felt deeply ashamed for feeling all of this, too. I still have to dig deep each morning to find an internal well of compassion, to remind myself that the exploring I’m doing is so, so brave. It would be easier to cover it all up with Snapchat filters. And some days I do that, too.
We’re all hiding from our pain. We’re all resisting it — the shitty childhood, the baggage we’re carrying from an old relationship. Hey, some of us can’t even take a sick day from work and be OK with it. Being in constant pain forces you to stare down this reality, making it impossible to ignore any longer.
I’m at Mayo because I’m no longer interested in ignoring this pain — every level of it. What I’m interested in is whether or not the doctors who rely on Western medicine can see where this pain is coming from and why it’s here. They’ve put in hours of sweat and blood and tears to be able to do just that. But their word is not the only word.
So as I enter a renowned place of healing, my intention is this: I’ll be here peeling back the layers of my own relationship to this pain. I’m getting cozy with all the stories I’m telling myself about it. It’s so easy for me to relate to this discomfort as a barrier. Or, no — as the worst possible thing that could have ever happened to me. But somehow — and I still don’t know how I know this — I feel that this pain is the perfect platform for my growth. There is purpose in this moment and in this pain, and I’m here to lean in and claim it.
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