“Having RA has given me an opportunity to be kinder to myself, love myself unconditionally, and to help so many more people in the RA community find this place of peace.”
I was diagnosed very shortly after the birth of my oldest son. Looking back, the RA symptoms were there most of my life, but the postpartum hormone changes really lit the fire. I could hardly care for myself, let alone my new baby. I couldn’t hold a baby bottle, zip anything, or even drink from a cup. I was asking anyone and everyone to help change his diapers and feed him because I simply couldn’t do it. The wrist and thumb pain was limiting and debilitating. With this inability to care for my brand-new baby came a deep depression. To finally meet your first born for the first time, and not be able to do the required things was devastating.
After struggling through my six weeks of maternity leave, I went back to my mentally, emotionally, and physically demanding job in a busy intensive care unit at a local hospital. The stamina and motor skills required of me were impossible after my symptoms became so severe. I was struggling to fulfill my job duties within my team. Due to these limitations, I ended up leaving the only work I had ever known, and it was a huge change.
At the time, I still wasn’t completely sure what this pain and limited mobility meant. I was a medical provider with several years of experience, and while I had an idea, the blur of returning to work after having a baby made it hard to think clearly about anything in my personal life.
The Journey to Diagnosis
Like many of you, my journey to diagnosis was a bit indirect. There were many twists and turns, rabbit holes, and several misdiagnoses. I was told many different things:
- I needed to lose weight.
- It was postpartum depression.
- This was “normal for a new mom.”
One doctor told me: “You need to take more strolls with your baby. You need to bond with the baby on outdoor strolls.” I cringed when I heard these words as I could barely dress to leave the house, let alone stroll. I left that particular office wanting to scream.
Finally, I was formally diagnosed. I had seen more than 15+ medical providers, had tons of imaging, lab work, physical exams, and many private discussions. I had seen the worst possible outcomes of RA, and it was difficult to see past these more rare than common horror stories. It was hard to see any future I might have for myself and my growing family at that moment.
Searching for Answers
Then the science-driven, nurse practitioner in me started searching for resources in my state that could help me manage my RA and all of these big emotions that came with it.
I started with talk therapy. The first time I went the therapist asked me “Is having RA like having cancer?” Needless to say, I did not go back. The second was all toxic positivity and no active listening. She suggested that 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. In my case, these talk therapists knew nothing about RA.
I gave up for a while. I decided I could manage on my own, as we have all tried at some point. I did what I needed to in order to simply survive. I made a dramatic career pivot, leaving the only field I had known my entire adult life. I hired more help around the house. Most importantly, I had long, hard conversations with my spouse, family, and closest friends about RA and what it meant for me. I gave up some things I loved, and tried to find new ways to fulfill my life.
Then, several months into this life of simply surviving, it was not enough anymore. I decided I wanted to help others and build something to make the arthritis community in my local city stronger. I got connected with the Arthritis Foundation and started the first support group in my state. It was so successful, so rewarding, and so much fun.
This group not only helped many other people in my community, but it deeply helped me. It gave me a safe space to be myself, where others were like me. We did things together that we never could have done on our own. We did it at a pace, and with modifications, that made it possible to include everyone. We reconnected with our inner selves. We learned how to live again with RA.
From there I started Rheumatoid Arthritis Coach, where I work one-on-one with women with RA to manage their symptoms, manage their minds, and live fulfilling lives with RA.
Finding a Place of Peace
I have now devoted my life to not only managing my life with RA but helping guide others to do the same. I have helped hundreds of women regain control of their symptoms and their lives. This is the most rewarding and inspiring work I have ever done.
The hardest thing for me and my diagnosis of RA was not what the future held, but grieving the former me. Hobbies I once loved, I could no longer do. I had new physical limitations. Defining healthy and fit was very different now. New challenges came with how I maintain my home and care for my children and pets. My joint pain changed the intimacy between my husband and I. It was hard to adapt, but changes were necessary to move forward with my life. I made these small, necessary changes over time — and I never look back anymore.
The most important thing I have learned about having RA is that you give it the power to control only what you allow it to. RA changes lives, but it does not have to change you. Sometimes I get angry about having RA, but then I remember that I couldn’t do this work, and help this many people, unless I had RA. The changes were necessary and I wouldn’t change anything.
As I said before, my list of “things about me” would have sounded quite a bit different 10 years ago. Having RA has given me an opportunity to be kinder to myself, love myself unconditionally, and to help so many more people in the RA community find this place of peace. In a way, I’m thankful for RA for making me the amazing person I am today.