Feeling Frustrated with RA

Last updated: June 2022

This article is really a reprise to a previous article that I wrote about going back to biweekly Humira shots. In some ways, how I’m feeling right now is exactly how I felt before I was first diagnosed with RA in October 2018, and that is terrifying. Though I know it’s not the same, the feelings are there.

I was living with RA long before I had a diagnosis

I had the realization the other day that I’ve actually had RA a lot longer than my actual diagnosis. The story really began on a random day in January 2018. I was taking a European history seminar at the time, and while taking notes, my hand instantly cramped up, and I could not move my wrist. My hand was extremely red and patchy and so incredibly painful that I thought I had broken my wrist somehow (hopefully not by writing). One of my best friend’s moms is a nurse, and after looking at a photo of my wrist, she encouraged me to go to urgent care. That was ultimately a fruitless experience, as the doctor there basically told me that because I was a young person, it must be carpel tunnel syndrome from “always being on my laptop, phone, etc.”

Doctors wouldn't take me seriously

The “young person syndrome” that I apparently had been diagnosed with would continue to follow me until the official diagnosis. Time after time, I would hear the same story. When my ankle locked up the next month and I could no longer walk around campus, I went to a different urgent care office. Although I was given prednisone, which was a helpful step, I was told the same story: “you’re young, it’s just a passing thing.” Then, when my joint pain started to spread throughout my body, I realized that I had to advocate for myself harder.

Finally, I received a diagnosis

Eventually, after a summer in London and at home, I arrived back in Florida with even more joint pain and other symptoms (fatigue, dry eyes, etc.). Upon waking up one September morning and unable to close my hands, I went to urgent care again—the same one that I went to before in January. I explained why I believed the previous information I had been given was not correct and that I knew something else was going on. She went through many ideas, ranging from stress to anxiety to depression. However, after explaining my full situation, the still skeptical doctor eventually said that it could be RA since my joint pain was so much worse in the morning. It turns out I did have an RA factor over 260.

Being ignored by my health care team led to emotional pain

It was frustrating to not be taken seriously about my body, my experience, and how I was feeling. I wouldn’t know this until later, but this would be the beginning of a familiar theme throughout my RA journey. Since then, many doctors did not take my RA seriously simply because I was young and therefore couldn’t have a joint disease—even after diagnosis!

I think what I’m trying to say is that my RA resurfacing brings back a lot of the emotional pain of the diagnosis journey, too. And I don’t want to deal with that, but it’s important to talk about it to help others realize that there is a lot more going on with an RA diagnosis than just the physical symptoms.

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