Pain Clarifies Priorities: Getting My Rheumatoid Arthritis Diagnosis and Creatively Recalibrating
Amy’s note: I’ve made such huge leaps in my healing journey since writing this post! You can read my year three update here.
"I can't walk," I struggled to say, lying on an exam room table at USC's health center six years ago as two doctors stood over me. My hip felt like someone had poured gasoline on it and laughed as they lit the match.
"There's nothing wrong with you," the doctor said after he completed with the exam. "Try a heating pad and some pain pills."
The medical staff called a car to take me back to my dorm, and I hobbled to the elevator, trying not to cry as I struggled to get back to my bed. Something was wrong with me -- this kind of pain wasn't normal. I didn't need a medical degree to know that.
But I wouldn't find out the cause until this past January. In the past 6-7 years, I've had joint pain that blasts out of nowhere, lighting different joints on fire one day to the point where I couldn't move -- or do anything other than pray that the heaviest pain pill dose I could concoct would actually work -- and then it would just disappear the next.
For the past two years, it started to get a lot harder to type or bear any weight on my wrists. This coincided with getting my 200-hour Yoga Teacher Training. In my yoga training, I almost completely lost my ability to do planks and other basic moves that were integral to the core yoga sequences. I had to get super crafty, and with the support of my teachers and fellow classmates, I redesigned entire sequences to be done on forearms instead (helloooo the challenge that is forearm crow!) so that I could teach yoga classes in the community. On my worst days, I struggled with the pain I was experiencing in a practice that was meant to be calming and restorative.
Then, 2020 came around, and things got a lot worse. Not only was I experiencing pain, but my joints started to swell as the fluid in my fingers and then my toes broke down and became something I couldn't ignore.
In January of 2021, I got to the doctor's office and after a set of blood tests, my official diagnosis came in: I had the autoimmune disease known as rheumatoid arthritis.
But Isn't Arthritis for Old People?
That's what I thought at first. I couldn't possibly have worn out my joints that much by the age of 26, could I?
RA is a lot different than osteo-arthritis, what we usually think about when we think about arthritis. Osteo-arthritis is often the product of overuse, aging, and diet/lifestyle.
RA on the other hand is an autoimmune disease that attacks joint lining and other organs like the heart, and it's usually rooted in genetic and triggered by environment/stress/trauma/things you're eating that cause inflammation (sugar, gluten, dairy, meat, other types of foods that uniquely cause your body to be like "nah, bro.")
For rheumatoid arthritis, you have to get to the root of what foods and environmental factors triggered the disease and address those, lower disease activity with a fuckton of aggressive drugs, and then hopefully get it into remission. Resolving things like a leaky gut using supplements and probiotics are a key part to reducing inflammation and pain in the body. Then after a few months/years (depending), you can go back to doing things like, say, eating gluten and drinking a little bit (what a party!)
Anyone can get an autoimmune disease if you have enough of a buildup of inflammation in your body. There's a bunch of other autoimmune diseases out there, and you can have more than one. However, despite the similarity of all of the different autoimmune diseases, they're siloed in modern medicine and treated by different specialists. There isn't a lot of sharing of information about the commonality of this family of disease, which is where functional medicine comes in.
What a Rheumatoid Arthritis Diagnosis Means
Before I got my diagnosis, I had a sinking feeling I knew what was going on. I had taken genetic tests that had shown I had two markers for rheumatoid arthritis (RA), which I learned was an incurable autoimmune disease that attacks your joints, decreases mobility, causes chronic pain, and in some cases leads to other issues like increased risk of lymphoma and heart attacks.
According to the World Health Organization, about 50% of the people who get an RA diagnosis are unable to work full-time after ten years. It's a serious disease, and also one of the most common autoimmune diseases, and about 1% of people in the US have rheumatoid arthritis. (So, hello fellow RA pals! Let's hang.)
Jokes aside, it was pretty scary when I got the confirmation of my diagnosis. It means that this pain will follow me for the rest of my life. At best, I'll be able to find a way to bring it into remission through a combination of medication, physical therapy, and diet/lifestyle changes and reduce or totally eliminate the pain. At worst, I'll need to get pretty creative about how to live with daily physical pain and build stronger mental models to find joy and happiness in my day-to-day.
I'd be lying if I didn't say that I'm experiencing a lot of fear and struggling to figure out what this means for my quality of life, but what this has also brought on a few long-simmering epiphanies about purpose and creativity.
Pain Clarifies Priorities
There's something very clarifying about being in pain. It sharpens what matters.
If we get too comfortable, we lose that sharpness. We lose ourselves in material things, in wanting what we don't have. But when we're hurting, physically or mentally, we see what's really important.
This past year, I've been reshaping my own priorities, which are:
Cultivating health and wellness where I can. I gave up coffee, alcohol, and gluten, became a soy-free vegan, and meditate and work out daily. I drink celery juice and make green smoothies, am attempting to eat nine cups of vegetables a day, and work with an awesome nutritionist to figure out what combination of foods can reduce the disease activity in my body. I've scaled my work back to essential projects only, so I can spend more time going on hikes and reading and journaling. In the past, I've put work before everything else, and now I'm learning how to invert that.
On the work side, continuing to write and produce episodes of The Last Station, the scripted podcast I've been working on since quarantine began. This project has been near and dear to my heart for a long time, and I've loved working with everyone on it. We've got two more scripted podcasts coming out this year produced by my company Kingdom of Pavement, and I can't wait to share these stories with you!
Working with incredible clients all over the world for my own freelance writing. Telling stories is so powerful: that's why I'm telling mine here. My work ghostwriting memoirs has been so life-affirming, and I'm excited to continue to work with inspiring people who also value the importance of sharing their stories with the world.
Spend more time traveling with friends and taking time to enjoy life and do things I love. I'm currently on a massive, four-month quarantine cross-country road trip with friends, and I couldn't be more excited. We're quarantining together in gorgeous places, and our first stop here in Nashville has been absolutely lovely -- even with the snowstorms!
Over the past year, I've learned how to find people who are aligned with what I care about, and who are just as passionate about bringing different things to life that deserve to exist. I couldn't be luckier to be able to do what I love every day and help others in the process, and that brings me a ton of joy.
We Are Our Environments & What We Consume
I don't think any of us truly realize how deeply our environments shape us.
Living in quarantine for the past year from COVID has been an insanely stressful time. I struggle with hypochondria and anxiety, and the pandemic has been a perfect storm of isolation, health fears, and stress as I faced an unprecedented amount of work that I loved doing, but found hard to manage at times when it felt like the world was crumbling outside my window and I felt helpless to do anything about it.
Luckily, I have incredible people around me who bring such warmth and love into my day-to-day. Being on this roadtrip has helped me find a sense of peace even as I'm scaling up on aggressive medications and supplementation plans to get this thing under control.
How can you fill your environment with people that support you and opportunities to grow?
We Should Talk More About Chronic Illness
I've been so grateful to have role models in my life of people who have dealt with chronic illness in positive ways. While we don't have to tell everyone all the details of our medical histories, I think the world would be a little warmer if we could talk about the things that ail us without shame.
In my research about rheumatoid arthritis, I've enjoyed reading books and blogs written by people who struggle from the disease. I think it's kinda awesome that we can connect with others around the world and share recipes, what's working for us, and share the hardships of what it's like to have a different set of challenges than we expected to have.
The world gives us different gifts and challenges, and it's our job to retain our agency to make decisions that will lead to finding happiness in the present moment, regardless of our situation. We need to stop saying, "I'll be happy when..." and just find a way to practice gratitude for what's in front of us, no matter what that is.
When we can train the mind through practices like meditation, suddenly life's struggles feel a lot more manageable.
So, moving forward I'll probably be using this space not only to write about writing and freelancing and storytelling, but I'll also be sharing more about my own mental models, approach to managing chronic disease, and how I'm still waking up every day and finding joy in what's in front of me.
Here's to making the most of our days, no matter what they hold.
