Rheumatoid arthritis (RA) is a debilitating autoimmune disease that affects approximately 1.3 million people in the United States, striking women three times more often than men. The disease causes the immune system to attack healthy body tissue, leading to damage to joints and organs. Patients with RA can experience fatigue, joint pain, stiffness, fever, and pain. The impact of these largely invisible symptoms on patients’ lives varies, necessitating lifestyle changes and ongoing medical attention.
Despite the many challenges that those living with RA face every day, patients continue to strive to live full, meaningful lives within the “new normal” of the diagnosis. Here, women who live daily with RA share their stories and their experiences, hoping to inform and inspire others affected by the disease.
Stephanie Aleite, 21
My journey with RA began when I was five years old. My mother was looking at my hands and noticed that I had a finger that was bent and would not straighten. Thinking I had broken it accidentally and not noticed, she took me to the pediatrician. The pediatrician immediately recognized the disfiguration and referred us to a pediatric rheumatologist, who gave us a name to the beast. It was a swan-neck deformation. Oh, and I had juvenile rheumatoid arthritis. My life was going to change.
After a couple of failed treatments, I am now on Actemra® (tocilizumab), and after seven months I’m finally starting to see improvement. Throughout my journey with RA, I have used a number of home remedies for the pain and the swelling that comes with the disease. These have included ice packs, hot packs, an assortment of arthritis pain creams, and pillows to elevate and keep my knees bent (straightening them hurts more) when I sit or sleep. Depending on how bad a day I am having, I also regularly use a cane, walker, or wheelchair. I don’t view myself using these as a form of defeat but as tools that make it just a little bit easier for me to get around. If it will make my life with this condition easier in any way, it’s worth paying the price of embarrassment or discouragement.
RA definitely makes life harder. I can’t do things I used to do or am supposed to be able to do. I feel old, and simple things like opening a bottle have become close to impossible; brushing my hair is a luxury. But having RA also gives me perspective and purpose, makes me appreciate the little things in life, and keeps my priorities in line. What is important to me is my family, my husband, and enjoying life to the best of my ability. If I can’t brush my hair today, maybe I will be able to tomorrow. Today is worth dealing with, for the hope of a greater outcome tomorrow.
The trick is to plan strategies for your days and to know your limits. I try my best every day, and I know that some days I will be able to do “this,” and some days I won’t be able to do “that.” It’s like the weather: Your days are predictable but have the possibility of changing at any time. Some days it will be sunny in the morning, cloudy in the afternoon, and pouring rain at night. Other days it will be the other way around. If you are fortunate enough, some days will be nothing but clear skies (pain-free).
RA, like life, just happens. It’s a journey, and like all journeys how you deal with it and the choices you make are crucial to the quality of life you will have. Being diagnosed with a disease as painful and debilitating as RA is disappointing, but life will go on, and as strong women we will adapt to whatever life blesses—or curses—us with.
Finding a great doctor has been key on my journey as has the support of friends and family. Educating myself and connecting with people who have RA have also made the journey easier and made me feel less isolated.
Ultimately, RA is a part of me but it doesn’t define me. I am not characterized by my illness, and my illness doesn’t stop me from having dreams and hopes for the future. Yes, I’m still waiting until I am well enough to do things on my own, but I still get up in the morning with hope. I do cry sometimes—it’s disappointing, and that’s okay. But I make sure I wake up the next day and do the best I can with what I can. I mourn the person I will never be, but I am not sad about who I am. RA has made me a stronger person, a better person. It has made me a more understanding person. Everyone struggles with something; this is my battle, and I won’t stop fighting.