Your Stories: How Online Communities Steered Me Toward an Answer When My Doctor Couldn’t

I rolled over onto my stomach and lowered the brightness on my phone, hoping the soft glow wouldn’t wake my partner who slept soundly beside me. I watched his stomach rise and fall, envious of his deep sleep.

It was 4:02 in the morning, several hours before my alarm was set to ring, and yet, I had been scrolling through the “ankylosing spondylitis” community thread on Reddit for the past two hours. Reddit was where I first went when I started experiencing bouts of pain in my hands, feet, and spine. It’s where I’ve found links to studies about the drugs I’ve been prescribed by my rheumatologist, trying to predict whether a particular medicine would be my “unicorn” and magically solve my disease. Mostly though, it’s where I go to feel less alone, where behind random usernames, I can find relatable anecdotes of dismissive doctors, sleepless nights, fights with insurance, and ways to manage my chronic illness.

I was diagnosed with psoriatic arthritis and axial spondyloarthritis at age 26. Before my diagnosis, I’d spent a year and a half seeking out answers for pain that seemingly crept up overnight. It wasn’t until I started sobbing in a doctor’s office, complaining of crippling back aches, that I convinced a doctor to take an x-ray of my lower spine. Two weeks later, I had a diagnosis.

In many ways, I’d been lucky. I had the means, health insurance, and time to see multiple doctors. Also, because my brother has rheumatoid arthritis, I was able to have a point of reference for what might be behind my pain and compare my symptoms to his.

After my diagnosis, I was promptly put on a biologic. I was hopeful that I’d found an answer, and my life and body would go back to what it once was. Before arthritis, I was on three soccer teams. I ran half marathons. I taught 7th grade special education and coached middle school sports in the evenings. My life was defined by physical activity. When I started having symptoms of my disease, all that stopped.

Despite the new treatment, the pain in my lower back only got worse. Two months later, my rheumatologist declared the medication a failure, and I was switched to another drug.

In the last ten years, there have been many new medications developed for treating diseases like psoriatic arthritis. This is great because it gives patients and doctors more options. What is challenging, though, is identifying which treatment will work best. Like with many autoimmune diseases, finding the most effective treatment plan involves a process of guessing and checking to find the best one. For some, it might be the first drug they try. For others, it might be the seventh.

Outside of my appointments, I regularly did my own research. A lot of that led me to online communities, like CreakyJoints.org, Reddit, and Spondylitis.org. I became obsessive at times, asking my partner to watch an episode of House Hunters, and instead spending the entire twenty minutes scrolling on my phone. I was anxious, looking for the “one” right answer that would tell me why the medication wasn’t working, or a success story that might one day become my own.

“You didn’t watch any of that, did you?” My partner would say, frustrated that I’d focused all my attention online, instead of being present with him.

“Not really,” I’d admit, feeling a sense of panic. Not only had I ignored my partner, but I hadn’t emerged with a solution. No matter how much time I spent searching, in the moment, I was still in pain.

In addition to the physical manifestations of the disease, I faced a new kind of loneliness that I’d never experienced before. I’d lost my connections to my soccer, running, and school communities. I watched as my friends continued to go about their lives around me. I often felt like I was on an island of one. Aside from my older brother who lived halfway across the country, I didn’t personally know anyone else with a similar disease. Except online.

In February of 2022, I was on my seventh month of taking a combination therapy of an IV infusion, and a DMARD drug, which consisted of eight pills that I took every Wednesday. Despite the high amount of medication that was in my system, I was not feeling any better. I tossed and turned throughout the night, unable to find a comfortable position on my back. Because of the chronic inflammation in my pelvis, I regularly walked with a limp.

During my scrolling, I found a link to a study showing that a type of biologic called an IL-17 inhibitor had proved to be the most effective at treating my type of arthritis. I took note to bring this up in my follow-up with my rheumatologist.

I went to my next appointment armed with a notebook. In it, I’d written down everything about my symptoms, and the note about trying this specific medication that I hoped might keep my inflammation at bay. I’d even practiced what I wanted to say beforehand, intending to convince my rheumatologist to switch things around. When my doctor came into the room, however, it was like all my preparation went out the window. I tried to express that I was not feeling better. He was convinced that I was. He towered above me, scratching at his beard before insisting that the medication I was on was one of the best available. He described me as a “tough case.” Instead of trying the IL-17 drug, he suggested we stay the course and add a third medication called a PD4 inhibitor that I was to take as a pill, twice daily.

I was hesitant. I’d read about this medication in a couple of my online communities.  Some had found it effective, but most hadn’t been shy to express the havoc it wreaked on their digestive system. But he was the doctor, and I was desperate to feel better. Reluctantly, I agreed to try it.

Two weeks later, I started the medication. I gradually amped up the dosage, until I was taking two 30-milligram pills a day. When I reached Saturday, after two bites into an everything bagel, I threw up. I spent the rest of the evening clinging to a toilet.

After a short break, my doctor suggested I try the medication again, this time with the aid of an anti-nausea and anti-acid medication. A month later, I was diagnosed with a hiatal hernia. Not only was I battling chronic pain, but I had developed chronic nausea and acid reflux from the medication.

At that point, I decided it might be time to get a second opinion. I scoured the “psoriatic arthritis” community page on Reddit for “second opinion” and came across a slew of advice, expressing the importance of advocating for yourself. According to my friends on Reddit, a second opinion was not uncommon. That night, I made an appointment with a rheumatologist at a different hospital.

The following month, I went to see the new doctor. I sat up straight, ready to defend my history, bracing myself for what she might remark about the difficulty of treating me. To my surprise, she responded candidly. “You’re a pretty straightforward case,” she said, peering at me over her blue glasses. “What we’ve seen is that the newer drugs tend to work better. It’s clear the medication you’ve been on is not working for you.” She vowed for the less-is-more approach, decided to take me off two of the medications, and prescribed me a new biologic—an IL-17 inhibitor-—the same type of drug that I was keen on trying.

Six months later, I am no longer taking any pills. I take one injectable biologic every 28 days. I still have some flare-ups. But now, the pain is manageable. I am walking more, biking, and (sometimes) running. Probably most importantly, I am sleeping.

I am not arguing that the advice of strangers on online communities should supersede that of your doctors. Also, it’s extremely important to be mindful of your time on any online platform. Going down a cyber-rabbit hole can take you out of the present moment, and away from the people you care about most.

Chronic illnesses like psoriatic arthritis and other forms of spondylitis are complicated to treat and often don’t respond to just one single approach. Online communities—like those I’ve found on Reddit, Creaky Joints.org, and the Spondylitis Association—can be powerful tools in your arsenal in managing your treatment plan, particularly in finding relatable human experiences and accessing more resources related to your illness. They can also serve as helpful reminders when you are tossing and turning with pain, or feel like nothing is working, that you are not alone in your battle. And maybe, they can help you find that extra bit of courage—like they did for me—to advocate for yourself, to get that second opinion, and get you closer to finding more answers.