Finding Courage in Chronic Pain

It’s been one year since I had my endometriosis excision surgery, and I wanted this to be my first ever blog post, both to bring awareness to this disease, and to help process the crazy whirlwind of the last year. The endo diagnosis changed everything from my artistic process to the way I think about my body, and though my health has drastically improved, my mentality around it is still evolving. I hope that, even if you don’t identify with the medical aspects here, you can connect with some piece of what it’s like being a creator in a world that prioritizes productivity at the cost of everything else. 

First and foremost, endometriosis is a disorder where tissue (similar to the tissue that lines the uterus) grows outside the uterus in places where it doesn't belong. Symptoms can include debilitating period cramps, fatigue, stomach issues, painful sex, and even fertility problems. It is incredibly common and incredibly under-diagnosed. For years I had symptoms that I had no idea were connected, and doctors brushed off my symptoms, telling me to “buck up” and “take more painkillers.” Guess what – not being able to get out of bed all day due to cramps is NOT normal. Technically the existence of endo tissue can only be diagnosed through surgery – it doesn’t show up on MRI’s – but a good OBGYN should know the signs. If any of this sounds familiar to you, I highly recommend reading The Doctor Will See You Now by Tamer Seckin; this book educated me and helped me advocate for myself.

To have someone finally validate and diagnose me was an immense relief. I was told I could manage my symptoms with a different birth control pill. I thought, “Oh, finally, things are going to get better.” I should’ve knocked on wood. 

Over the next four months, I went from having excruciating periods to being in pain every single day. I’d get out of bed, take my dog out, and have to come back and curl up on the floor because it hurt so much. I was constantly exhausted because the pain would keep me up at night, I couldn’t exercise, and I certainly couldn’t hold my focus enough to write. I was told “it can take time for your body to adjust to a new birth control pill,” so I had to wait it out.

I felt lost and helpless. It was all I could manage to take care of myself. I didn’t have the capacity to do the things I wanted to do, and I couldn’t contribute to the other people and responsibilities in my life in the ways I was used to. To this day, I don’t know why I declined so quickly. I am incredibly privileged and thankful to have a support system that helped me get through it, but the experience of relying on other people for so much was entirely new to me. 

Growing up as a “gifted kid” or “high achiever” or whatever else you want to call it, interruptions to my physical or (gods forbid) emotional state were brief, because they had to be. I didn’t have time to get sick or deal with grief. But this… this wasn’t something I could get over. I would wake up hoping for good days, and there were some, but never more than a couple at a time. Not enough for me to pick up all the balls I had dropped.

For the first time ever, I had to become okay with not being okay.

And that terrified me. What if people thought I was lazy (worse, what if I was lazy)? What if, in allowing myself to relax, I lost the drive and ambition I’d had for so long? What if I never got it back? What if I couldn’t get it back because I was like this forever?

Reading about other women with similar experiences helped me cope. Much as it angered me (and still does) to know how prevalent this problem is, it was a huge comfort to know I wasn’t alone. As time went on, and my support systems didn’t, in fact, dump me overboard for being too much of a burden, I took solace in the good days, and gave myself grace during the bad ones. My mantra became, “all you can do is all you can do.” But still, that little voice in the back of my head clung on. You need to fix yourself. You can, and should, be doing more.

I finally told my doctor I couldn’t go on like this, and I didn’t want to keep trying different medications if this was what could happen. We started looking toward surgery. There are two practices for removing endometrial tissue – an older method that burns the tissue off but causes a lot of scarring (on which the bad tissue can eventually grow back), and a newer method that cuts out (or ‘excises’) the tissue at the root. Not very many doctors do this yet, turns out. I could write an entire essay here on the state of women’s healthcare… but I’ll spare you. 

I was lucky enough that one of the best surgeons trained in this new method lives in Portland. I went to see him in mid-April last year, and they put me on the list to come in for surgery in July, which seemed like an impossibly long time, especially because I was getting married in September. The next week, they had a cancellation, and because I had said “please god get me in as soon as possible,” they called me. I had two days to mentally prepare, get my insurance in order, tell my family, find someone to take care of my dog, and then we were off to the races. In the end, it was probably a good thing I didn’t have all that time to freak out about it. I’ll spare you the gory details of what they found, but it did explain a lot. 

The recovery period (before you can do things like exercise, lift things, etc.) is 6 weeks. I was so eager to get my groove back, so ready to be a productive member of society again; I gave myself one week before I wanted to be back to writing at my pre-decline output.

I was still tired all the time, on a ton of medication, and in a decent amount of pain. I couldn’t focus for more than an hour a day. I told my friend about my frustration, and that I felt like I needed to work again because I “took a week off,” and he said, flabbergasted, “YOU HAD SURGERY. THAT’S NOT VACATION.” It seems silly now, but I really felt like if I wasn’t working toward something I was wasting time. Like I was a waste of space.

Finally I looked at my mental state and went, “Oh. This isn’t healthy.” I took some time to focus on my mental health (something I’d never done before) and did a bunch of reading on mindfulness (something I’d previously dismissed as fluffy nonsense). Like therapy, I think it’s one of those things you won’t find useful until you’re ready. It made me look inward and ask myself some big questions. What did I want from my life and why did I want it? What did I value and why, and were some of those things actually hurting me more than helping? 

I realized that most of my life, I’d been driven by fear. Fear of failure that made me study so hard I had no social life; fear of losing the reputation I had for being “smart” and “disciplined” and “hard-working”; fear that if I didn’t keep writing and finish another book as soon as possible, I’d never get published, never be able to financially contribute in my relationship, and never be looked at with respect (“What does she do all day?” they’d say. “She doesn’t even have a real job.”) And then, fear of, ‘if I get rid of the thing that’s always driven me, how do I keep moving forward?’ What was I supposed to put in place of my fear?

The answer was, astoundingly, joy. 

Crazy, right? Another thing that seems obvious looking back, but when people say to do what you love, no one talks about what that actually looks like in practice. Or how hard it is to actually, continually, find that joy when you’re bogged down by logistics and minutiae. It’s something I still have to remind myself to do every day. But I started by throwing out the novel I’d been torturing myself over for the past several months. It was tainted, and I needed something new.

I always try to incorporate real world things that are important to me into my fantasy worlds–class divides, family struggles, identity–so I started by brainstorming what was important to me right then. They were the things that had gotten me through several months of hell: friendship and love. And they were the things that I still struggled with: fear of failure, life not working out the way I’d planned, what is a life’s purpose anyway, and the reason why I wanted to write books at all.

And then, instead of agonizing over plot structure and character beats and planning and worldbuilding, I decided just to start writing. By hand, in a notebook, just a few pages a day, with no plan to share with my critique group or bother about word count or any of the things that had become integral to my writing process, and something remarkable happened.

I had fun.

I remembered that stories were supposed to be joyful. I let my characters live in my head again. I’d finish writing for the day and hop in the shower and think of scenes I was excited to write tomorrow — this was a thing that had disappeared for a LONG time, and I can’t describe how excited I was to get it back. I encourage everyone to do funny little voices and role play your own characters in the car. My protagonists (influenced a little by a couple beloved D&D characters who only got a few months of playtime) became real people who made stupid decisions and suffered the consequences and loved and hated, and I let myself not care about doing it “right.” I’d figure out how it all fit together later. 

I’m still incorporating these ideas into other aspects of my life, fitness and positive self image being the biggest thorn in my side. I used to follow meal plans and exercise routines to a T for several weeks, and then burn out and hate myself–a disgust that would build up until I started the whole process again. I realized that if I could figure out a way to enjoy being healthy, I’d do it for its own sake instead of the end result. For the joy of feeling like superwoman doing overhead presses and being comfortable in my clothes. Having just finished physical therapy a couple months ago to undo all the muscle and joint issues that chronic pain causes (turns out being curled up in the fetal position several hours a day isn’t great for you) I still battle with myself over this, and the difference between what I’m currently capable of and what I was once able to do. But I’m learning, and most days I’m a thousand times happier for it.

I’d love to tell you that what came out of this period of self examination and a return to discovery writing was a masterpiece immediately ready for publication. Truthfully, the first draft of Oblivion’s Hymn (working title) was an utter dumpster fire. But it was a fire I was happy to work on putting out. Has editing this book felt like a chore at times? Of course. Has it taken WAY longer than I’d hoped it would to excavate a proper plot, sand down my character arcs, and polish the world until it shone? Absolutely. But for the first time, as I’m heading into yet another draft, instead of the dread and fatigue I’ve felt at this stage in previous projects, I’m hopeful. I know what I’m doing will improve the story; I know I am saying what I want to say. I’m still a little worried about “wasting” time, but it no longer consumes my life. This story will take as long as it takes to be the best it can be. And that will (I hope) make me more resilient whenever I am ready to send it out into the world. Hell or high water, in whatever form, I’m ready to publish a book. I can’t wait to share it with you.