Four Years and 200 Articles Later
It’s nearing two decades since my diagnosis of rheumatoid arthritis/rheumatoid disease (RA/RD). Before long, the post-diagnosis length of my life’s timeline will be longer than the stretch before I knew I had this disease. Painful symptoms plagued my childhood and teenage years, but the misdiagnoses of sprains, tendonitis, cartilage issues, and chronic fatigue syndrome shielded me from the truth: I have a degenerative autoimmune disease without a cure.
When I finally received my RA/RD diagnosis at the age of 22, I was terrified. What would happen to my body? Would my hands morph into the disfigured structures featured in the posters and models in my rheumatologist’s office? Would I have to use a cane or even a wheelchair? Perhaps even more frightening, I wondered, “Will I still be able to have a life worth living?”
At a time when most people feel their adult lives are just starting, I wondered if mine was over.
While I have experienced intense challenges in the 18 years since learning I have RA/RD, my greatest fears have not been brought to bear. My hands have experienced some drift and there is some swan-necking in my pinky fingers, but the disfiguration isn’t severe enough to be obvious. I’ve had to use a cane during some severe flares, yet most of the time it gathers dust in my closet. I am lucky to have never required a wheelchair.
Most importantly, my life is definitely worth living.
RA/RD has often impacted my timeline or shifted my expectations, but it has never prevented me from achieving my most important goals. In the 18 years since my diagnosis, I finished college (a semester later than I’d planned) and obtained a master’s degree. I have a career (that has seen a few RA/RD twists and turns thrown in, but continues on). I’ve married a wonderful man and birthed two healthy babies. I participate in civic and volunteer activities I find meaningful. My life is full.
There have been RA/RD delays and even a few RA/RD derailments along the way, but I’ve always eventually gotten back on course. Detours continue to be required from time to time, but I keep moving. While I’ve been frustrated and disappointed when hitting a RA/RD roadblock, occasionally this re-routing has taken me to some fascinating places. Most notably, it has led me to this online community.
I began writing for this website four years ago. In one of my RA/RD re-routes, I’d switched from a full-time job to a part-time one, and I was looking for a way to buffer the loss of income. Then, through some serendipitous circumstances, I was brought on as a freelance contributor to this website. I’d previously never participated in an online health community. In joining RheumatoidArthritis.net, I’ve gained much more than supplemental income.
Over the past four year, I’ve learned, grown, laughed, sighed, and cried in this community. In the process of sharing and reading, reaching out and listening, I’ve created articles about my lowest points, my silver linings, research findings, personal experiments, and the people and the things that help me through the challenges. Somehow, over the course of the past four years and the flares, medical mysteries, treatment changes, and repeat illnesses they’ve included, I’ve managed to write 200 articles.
Two hundred articles.
If someone told me four years ago that I would write well over 100,000 words about living with RA/RD, I would have scoffed. Yet, in spite of the self-doubt that’s so hard to let go, and perhaps because of the pain I’ve endured, here I am writing my 200th article. I’m proud of this accomplishment, but more than that I’m grateful that this process has not been in isolation, and instead has been within an online community of people reading my stories and sharing their own. This has been a profoundly powerful experience, and has led me to these takeaways:
- I am not alone in my pain.
- The physical pain I experience can cause strong emotional pain, and others experience this also; knowing this helps me see my reaction does not equate weakness.
- When we can connect and comfort one another, we also comfort ourselves.
- We are capable of extraordinary strength in the midst of physical vulnerability.
- Self-doubt infects so many of us, and blinds us to our strength. We often overlook our courage by focusing on our deficits.
- Validation that we are doing the best we can in our tough circumstances is powerful.
- Sharing our stories with one another weaves a connecting net that can catch us when we begin falling into despair.
- The connection of shared knowledge and shared stories can give us hope.
For all of this, I thank you. As I sit writing this 200th article, I’m reflecting on how many times I’ve written about my darkest moments, my deepest fears, and my greatest vulnerabilities. Not only has this community not turned away from my ugly truths, you’ve responded with, “I thought it was just me.”
If I could travel through time to visit that terrified college student just given the diagnosis of a lifelong disease, I would tell her that she will weather this storm. There will be pain and grief and fear and challenges, but there will also be courage and strength and comfort and support and even . . . community. I would tell her that she will be inspired by others and that she will even be an inspiration from time to time. She will remind people they are not alone in their human reactions to this hard disease and they will remind her of her humanness in turn.
Thank you for being here in this community and making it possible for me to share my story. Thank you for letting me know I’m not alone.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?