I first met Myra on a Saturday afternoon in April. It’s likely we had crossed paths before but I had never recognized her. Initially, her presence was slightly unpleasant but subtle. Within a few hours, she was hard to ignore and full of negative energy. So negative, she reduced me to tears. I didn’t invite her to stay but she stuck around for a few days anyway. When she finally left, I was full of relief and optimistic that she’d never come back. Unfortunately, she showed up again a couple weeks later. Her intense negativity sucked the joy out of my life. I wasn’t sure how to get rid of her. An exorcist? A shaman? Turns out, I needed a rheumatologist.
As you’ve probably guessed, Myra is not a malicious person or an evil animal. She is my rheumatoid arthritis (RA), who I am affectionately(?) naming MyRA. In April, I experienced three extreme flares in my hand and foot with some of the most intense pain I have ever felt. A few days ago, I learned that Myra was the cause of these. She is officially here and will be with me forever.
RA is an autoimmune disease where your body mistakes your joints for an invader and starts attacking them. This causes severe inflammation, pain, and stiffness in your joints. Without management, its natural progression is to damage the fluid in your joints and then your bones. Eventually, your bones fuse together which results in loss of a functional joint. There is no cure for RA; it requires lifelong treatment with medication that suppresses the immune system. While having a weakened immune system in the midst of the COVID-19 pandemic is less than ideal, it did mean that the rheumatology clinic was so slow on the day of my appointment that my doctor and resident spent nearly 90 minutes with me. We are hopeful that we have caught Myra early in her progression and are taking an aggressive treatment approach to protect my joints.
Up to 1% of the US population has RA. It is twice as likely in women as in men and typically affects people in middle-age. As a healthy, active 33-year-old, I wasn’t expecting to receive a chronic disease diagnosis that will accompany me for the rest of my life. My biggest fear is that Myra will prevent me from doing the things I love: flying trapeze, playing with my nephews and niece, walking, dancing, hiking, exploring new places while traveling. Honestly, just putting that fear in writing brings me to tears. I’m grateful to know two other people with RA; one who was just diagnosed months ago and one who has had RA for decades. I know they’ll be essential parts of my support team.
If there is any silver lining to this diagnosis, it’s that I can relate to my patients on a more personal level. I have spent my career specializing in the chronic diseases of obesity and diabetes. While my experiences with my patients have made me an empathetic provider, I now know what it feels like to be told that you have a lifelong disease that you can treat but never cure. I know the emotions that accompany the recognition that life will never be the same again. I know the complexity of fearing medication side effects while recognizing that without meds, your disease will progress more quickly. As I process the concept of my new lifelong companion, I’m documenting this moment with all of its emotions, questions, and vulnerabilities. I hope that in the years to come, when I feel more confident and comfortable living with Myra, I can look back at this post as a humbling reminder of how it feels to start the journey of chronic disease management.