July 29, 2022
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Collage design by Ryan Hamsher; Photo contributed by Stefanie Remson
Welcome to From Practitioner to Patient, a column by Stefanie Remson about living with arthritis. Stefanie is both a nurse practitioner and a patient living with RA. She’s here to share what she has learned from her own experiences as a patient and to demystify the medical side of navigating arthritis through her knowledge as a nurse practitioner.
Hi, I’m Stefanie. Welcome to my column! I wanted to start by telling you about when I became an RA patient — my journey from practitioner to patient.
I am a wife to a wonderful husband, a mother to two young boys, and a family nurse practitioner. I love the color pink, gardening, and audiobooks. I have three golden retrievers. I’m also a rheumatoid arthritis (RA) patient.
If you asked me to describe myself 10 years ago, it wouldn’t have sounded quite like this.
I was diagnosed within weeks of the birth of my first son. For months, I’d struggled to care for myself.
Zippers and buttons were impossible. Washing my hair required help from a friend. I couldn’t feed my new baby, change a diaper, or even hold him because of debilitating wrist pain. It was hard to keep up with my physically demanding job, which required a lot of fine motor skills and the use of my hands.
My journey to a diagnosis was long and rocky. There were many twists and turns, rabbit holes, and misdiagnoses. I was told a whole range of things: I needed to lose weight, it was postpartum depression, or it was “normal for a new mom.”
When I was finally diagnosed, I was devastated. I had seen the worst possible outcomes of RA as a healthcare professional, and it was hard to see past it.
I immediately looked for local resources to help me manage my RA, but I was shocked to find there were none. So, I tried talk therapy.
The first therapist asked me, “Is having RA like having cancer?”
The second exuded only toxic positivity and suggested I was “young and would recover quickly. Mind over matter!”
The third therapist handed me a ball of clay and asked me to create my feelings with it.
Clearly, these professionals knew nothing about RA.
RA changes lives, but it doesn’t have to change you.
I ended up struggling for a while without any truly effective ways to cope with the emotions of my diagnosis. But I did what I needed to in order to survive the day-to-day: I made a dramatic career pivot, leaving the only field I’d known my entire adult life; I hired help around the house; and most importantly, I had long, hard conversations with my closest friends about RA and what it meant for me.
I decided that I not only needed help and support for myself, but I also wanted to help others. I was shocked that despite my professional proximity to chronic illness, I was still isolated and completely lost.
I got in contact with the Arthritis Foundation and started the first support group in my state. It was so successful, so rewarding, and so much fun. The group gave me friendships that will last a lifetime. We did things together that would have been impossible on our own, we learned who we were again, and we taught ourselves the new limits of living with RA.
From there, I started Rheumatoid Arthritis Coach, where I teach women with RA how to manage their symptoms, manage their minds, and live better lives every single day.
I’ve devoted my life to managing my RA and guiding others to do the same. I’ve helped hundreds of women regain control of their lives. It’s the most rewarding and inspiring work I have ever done.
The hardest part of my diagnosis wasn’t what the future might hold, but grieving my former self.
I was a very athletic and active young person. Modifying my exercise routine was challenging. I had to find ways to do low impact exercises that didn’t involve a lot of wrist, elbow, or ankle strain. My golf, volleyball, and soccer days came to an abrupt halt. But now, I find so much pleasure in walking my dogs, doing modified Pilates and yoga, and lifting weights with adaptive equipment.
Although my life isn’t perfect, I’m proud to say I’ve found a happy mindset to live in every day. I do not let RA dictate my life. I even have days when I forget I have RA altogether.
There’s so much hope. Remember that there are new treatments, new research, and new professionals regularly entering the field. There’s so much to look forward to.
Sometimes, I still get angry about my diagnosis, but then I remember that I couldn’t do the work and help the people I do unless I had RA. In a way, I’m thankful for RA for making me the amazing person I am today.
The most important thing I’ve learned about having RA is that you let it control only what you allow it to. RA changes lives, but it doesn’t have to change you.
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