I am 35 years old and I have rheumatoid arthritis.
It was two days before my 30th birthday, and I was headed to Chicago to celebrate with some friends. While sitting in traffic, my phone rang. It was my nurse practitioner.
A few days earlier, she had run another series of tests in hopes of figuring out why I was so sick. For over a year, I had been losing weight (I miss that part), febrile, run down, short of breath, and sleeping constantly. My only joint-related complaint was occasionally I couldn’t move my arm for a day. All my symptoms were vague.
I picked up the phone. “Carrie, I have your test results. You have rheumatoid arthritis.” My nurse practitioner rambled on about how I was to get X-rays that week and see specialists as soon as possible, but this was a blur at that moment. My head was spinning. How was I getting an old person’s disease? I wasn’t even 30 yet! My hands ached sometimes, and I felt like I always had the flu. I thought my nurse practitioner had to be wrong.
After that phone call, I would spend the next few weeks feeling sorry for myself or in denial. Images I had seen in pharmaceutical commercials of old women with deformed hands would regularly pop up in my head. When I started searching the internet for some glimmer of hope, it was mostly doom and gloom. Stories of deformed joints, immobility, and loss of daily functioning were everywhere. This wasn’t who I was.
I was sick, yes. But I was fun! I was bartending at a brewery, doing hair for local theater productions, and just about to start nursing school. I told myself, “Not a chance I am giving up delicious IPAs and hobbies. I am not old, I am young and full of life. I’m not going to let my illness take control. I am in charge!” This dedication to living a normal life gave me the energy I so desperately needed to forge ahead.
After meeting my rheumatologist and getting a stable dose of steroids and methotrexate in me, I decided to try to be a voice for young women like myself. I wanted women to know that things will be OK: Every dream or hope you have is achievable — you may just have to modify a few things. My life changed completely yet somehow remained the same.
I still went out for drinks and dinner with my friends. But instead of downing a whole bottle of wine, I limited my drinking to a glass or two, knowing if I didn’t I would be paying for it later. When we did activities such as kayaking, I knew my wrists would fatigue more quickly. So I would find rivers that had manageable currents or wrap my wrists. When hiking, I had all the necessities in my pack: capsaicin cream, ibuprofen, water, Ace wraps, and extra shoes. You learn to adapt quickly to do the things you love — otherwise, depression may take hold.
You learn that you can be sitting in a room full of people with agonizing joint pain, and no one would know. We keep our pain close, as only those who suffer from this illness truly understand. When someone says, “You don’t look sick,” I’ve learned to smile and be grateful, for that is a compliment. It’s exhausting to try to explain the pain some days, and getting offended by that comment serves no purpose.
In my five years with RA, I’ve had many changes. My diet has gone from eating anything I want to full-on vegan. Eating vegan made me feel the best, by the way! Exercise can be excruciating, but it’s crucial physically and emotionally. I went from someone who walked on occasion to doing kickboxing, spinning, and yoga! You learn when cold weather comes, you best get ready. The cold, wet Midwest winters are brutal on the old joints. I found a nearby gym with an infrared sauna for those crummy cold days.
Since my diagnosis five years ago, I’ve graduated nursing school, climbed mountains, got engaged, traveled abroad, learned to brew kombucha, started cooking healthier, taken up yoga, zip-lined, and more.
There will be good days and bad days. Some days you may wake up in pain, with no warning. It may be the same day you have a presentation at work, your kids are sick, or you have responsibilities that you can’t push aside. These are the days we may do nothing more but survive, but some days that’s all that matters, so be kind to yourself. When the pain creeps up, and the fatigue consumes you, know that better days are ahead, and you will keep living the life you have always wanted!
Carrie Grundhoefer is an RN-BSN at Mercy Hospital in Dubuque, Iowa. She lives in Galena, Illinois, with her fiance. She is currently attending Allen College in pursuit of a master’s degree in the Psychiatric Nurse Practitioner program. She is on the board of operations at Opening Doors women’s shelter and is passionate about women’s empowerment. During her free time, she manages TheRAgirl.com in hopes of empowering young women with RA to live their fullest life.