How Medical Gaslighting Delayed My Treatment For Arthritis

My journey with juvenile arthritis began before I can remember. When I first began to walk, my parents noticed I was dragging my leg. I would also cry a lot if I had to walk longer distances, and my knees and ankle joints were often swollen. This led to a juvenile arthritis diagnosis at age 2, but the condition was controlled to a couple of joints, and by the time I was 10, I was considered in remission.

Even so, I felt like I experienced life differently, due to the regular doctor appointments and residual aches and pains that came with my diagnosis. But my parents enrolled me in sports that were gentle on my body and I was able to pass as able-bodied most of the time. They also never sat me down and explained what chronic illness was, so I never thought much about it. Only when my symptoms overwhelmed me in early adulthood did I have to confront the way juvenile arthritis impacts my life.

Swollen joints became my norm. Living away from home, without the childhood doctor I had seen for the last 20 years or my parents around to support me, I had to learn how to advocate for myself, fast.

The first doctor I visited for my symptoms told me that this new wave of chronic pain was not arthritis. They said I was showing clear blood work and looked healthy, so I was likely just overdoing it in the gym. I didn't know it at the time, but this was my first experience of the medical gaslighting that wrecked my 20s. I went on to see nine different doctors throughout college, each one just as unhelpful as the last, but desperation drove me back into waiting rooms time and time again.

Looking back I can see my own naivety. I still held tight to the belief we were all taught growing up: doctors are always right. I left each doctor's appointment thinking, "Maybe I'm being dramatic. Maybe I'm just imagining these symptoms. Maybe it's not a big deal that climbing the stairs is impossible. Maybe this is all in my head." Still to this day I feel the impact of that gaslighting. It lives like a voice in my head each time someone downplays my symptoms or I'm denied help for a flare.

Fast-forward to post-college, and I was living in New York City, working full-time as a nanny — a physical endurance test even for those without chronic pain. One day, a full-body flare hit me. I couldn't open my jaw, my arm was locked up, I couldn't walk. My body finally said enough is enough, and understandably so.

Up until this point I was relying exclusively on ibuprofen and intermittent physiotherapy, which isn't exactly a treatment plan for an autoimmune disease. That flare finally sent me into the office of a rheumatologist, who at least believed me and acknowledged my symptoms as arthritis. They sent me away with a prescription for a biologic shot, which can help relieve symptoms. But they didn't provide much information about living as an immunocompromised person or how to cope with other symptoms of the disease.

I felt isolated, alone in my illness, and I was grieving the spontaneity and freedom I saw other people in their 20s enjoying. This feeling of hopelessness paired with a lack of real ongoing medical support took me down an internet rabbit hole and into the arms of an "online health coach." I drained my bank account to pay for the coach, only to be given a restrictive diet plan that made my symptoms worse, not better.

I didn't realize I'd adapted so many movements in my daily life — I practically stopped letting my wrists bear any weight because it was so excruciating. With chronic illness, our brains just continually figure out ways to keep going, but the patchwork of bandage solutions isn't sustainable in the long run.

While trying and failing to find doctors who would listen to me, I leaned heavily on alcohol to keep up with my abled-bodied friends who wanted to spend the weekends partying after full-on working weeks in the city. Alcohol felt great in the moment — it numbed my physical pain and mental struggles. But the highs didn't last forever. My friends became concerned that I was spinning out of control. They tried to intervene, but I didn't have the words to communicate what I was going through.

When the pandemic hit, everything came crumbling down at once. At this point, I'd spent the last decade in pain and feeling like I was losing my mind because I wasn't being believed. It was a dark time, but it was also almost a relief to accept that things really were that bad, so bad that I knew I needed to get better help for these symptoms. I needed to feel heard.

Once I found the right specialist — a doctor who took the time to read my history and discover that psoriatic arthritis runs in my family — I was able to get a diagnosis of psoriatic arthritis. And that led to me being able to get my physical symptoms under control for the most part. My treatment plan included a new trio of medications (methotrexate, biologics, and Celebrex) alongside important lifestyle changes like cutting out alcohol and finding a gentle exercise routine. Still, the previous 10 years had destroyed my mental health. I had to pick up the pieces.

On my worst days, I felt that I hadn't tried hard enough in the past to get help. But now I realize I was never the problem — it wasn't my fault I wasn't taken seriously. I had to forgive myself.

I'll never forget when my husband had a kidney stone. The hospital instantly listened to his concerns, placing him on morphine the moment we arrived. That told me everything I needed to know about the way women with chronic pain are systemically dismissed.

Of course, it's important to educate women on how to advocate for ourselves in medical settings. But too often our pain is viewed as inconsequential, hysterical even, and that's something that urgently needs to change.

Hannah Turner is a disabled writer and journalist living with complex chronic illnesses. Her writing focuses on disability, anti-wellness culture, and pop culture. Her words have appeared in many places, including PS, Refinery29, Mashable, and Dazed.