Despite pain, she is living a full, joyful life.
Thirty-five-year-old Marie Marotta has faced many hardships in her life. She has taken care of her dying mother, grieved her passing as well as her oldest brother’s, and lived with rheumatoid arthritis/rheumatoid disease (RA/RD) for 15 years. Yet despite the profound loss and pain, she still feels blessed. “I am lucky in the things I feel matter most in life,” she says.
Diagnosis at a Young Age
Her RA/RD journey started when Marie was home from college. She started experiencing a strange symptom: On several mornings, she could not turn the key to start the car. She told her mom, who became concerned, but Marie reassured her that the symptoms went away as the day went on, and not to worry. But a few days later she bumped her hand, and instantly, Marie was on the ground in excruciating pain.
Marie’s dad made an appointment with their family doctor, who believed the problem was RA/RD, based on Marie’s bilateral intense hand pain. Marie had never heard of the disease before, but with the pain intensifying, she started calling rheumatologists.
Marie’s mom attended her initial rheumatology appointment. As the doctor began to explain the disease, treatment, and what she would need to do remain healthy throughout her life, Marie’s mom insisted he redo the blood test—just to make sure. Understanding and kind, he retested her blood. But the result was the same: Marie had RA/RD.
The doctor took an aggressive approach to her disease. Marie was prescribed a steroid and a disease-modifying anti-rheumatic drug therapy (DMARD) medication. She welcomed this; she was eager to get her symptoms under control, and determined to study abroad for nine months in Florence, Italy. (She took the trip—and met her husband, Jeff.)
While her diagnosis was devastating, Marie can also look back at that time and feel lucky.
“From symptom onset to diagnosis and starting treatment was about four to six weeks,” says Marie. “That is so fast, and I have my doctors and parents to thank for that. They advocated for me when I was still too young or inexperienced to do so for myself.”
Learning to be an Advocate
She explains the disease to others as an autoimmune disease that causes swelling like typical arthritis, but slightly different.
“My body does this thing where it thinks my joints always need to be swollen,” she says. “It is trying to heal itself, but the healing is out of control. Too much swelling leads to joint damage, and eventually damage to the bone. This means I need to take medications to limit my immune system from trying to help me heal all the time.”
Marie does not take her early diagnosis, quick treatment time, knowledgeable providers, or her initial health insurance for granted. Without her dad’s incredible coverage, her journey would have been entirely different.
But Marie did begin to experience issues with the health care system in 2004, two years post-diagnosis. She had joined AmeriCorps after college. No longer in school and without an income, Marie found herself unable to obtain the coverage she needed because of her pre-existing condition.
Marie did not give up. She did her research and contacted insurance brokers, eventually reaching out to her father’s insurance company—making the case that she was in a training program with no income and without other coverage options. She persuaded them to keep her on her father’s insurance.
“From that moment, I learned how to advocate for myself,” Marie explains. “I was on the phone constantly. I just kept calling, taking notes on who I spoke to, the time I called, who I was transferred to, and the outcome of each conversation.”
Knowing ongoing care will always be a part of her life, Marie is cognizant of the importance of maintaining insurance. Early on, she was mad she had to work early shifts and every weekend to keep benefits to pay for an illness she hated. But that all changed when she viewed her Explanation of Benefits statement and saw the actual costs of her care. The next day she went to work thankful for a job that provided her great care.
“It was a turning point for me,” she shares. “Not everyone is this lucky to have access to coverage or parental support if needed. I had no right to be angry, I was really blessed.”
Shaping Her Career—and Support System
Being diagnosed at a young age meant Marie shaped her career to fit her physical capabilities. She became a social worker and counselor.
Her roles as patient and professional complement each other; through her own experiences, she is better able to help others advocate for themselves. Similarly, the tools she learned in school and through her practice have given her an advantage in navigating the medical system.
“I think I have a better understanding of what to do because I work within health care,” she says.
While Marie did have to give up playing sports (something she loved and excelled at), she has found other ways to be active and creative. In fact, she feels RA/RD made her a healthier person.
“Everything changed with my diagnosis,” she explains. “I had to change my habits, go to bed earlier, not drink as much alcohol as my college friends, and find ways to exercise. It was only years later that some of my friends also made these lifestyle changes. I just had to pay attention to this as a young woman, and that is OK.”
Today, she is candid about her illness and the impact it has on her life. She talks about all the struggles she has endured, and how life is worth living. Her husband, Jeff, is her rock. He has only known Marie with RA/RD, but it has never been an issue for him. When they met abroad, Jeff liked Marie for who she was—her quirks, industrious study habits, humor, kind heart, and of course, her disease. He told her they would deal with whatever comes together.
“He takes on the heavy lifting, the yard work, or any task that is too taxing for my joints,” Marie says. “Plus, he is an amazing dad to our adorable kids, John and Clare.”
Marie’s parents, brothers, and friends have also played an important role in her journey. They offer her emotional support, encouragement, a listening ear and friendship. Marie has a rule that she will try to only say “no” twice in a row to a friend’s invitation; the third time, no matter how she feels, she will come. “I have been honest with my friends, so they understand I am not avoiding them because I am too tired to come,” she says. “I even ask them to please keep asking me to do things.”
Creating a Wellness Ritual
What keeps Marie as well as possible besides medications—including DMARD, biologics, and non-steroidal anti-inflammatory drugs (NSAIDs)—is her wellness ritual. She wakes early every morning to begin the day with a gentle yoga practice followed by meditation. She then walks her beloved dog, Nora, before having coffee and preparing lunches. This ritual helps her maintain peace amid chaos. “It is my perfect way to start the day,” she shares. “I am more present when my kids wake and I am able to enjoy the mornings.”
Marie has also turned to physical therapy (to ensure appropriate gait), acupuncture, and a healthy diet to round out her treatment modalities. Throughout the day, Marie pays attention to how her body is feeling—standing and stretching when needed. She reads each night (even if it is just a page) and goes to bed early.
Seeking Peace and Empowering Others
Marie wishes there was more compassion in this world. Everyone struggles, and instead of placing judgement or being mean, we could all be kind to each other. RA/RD is a devastating illness, but people are not just their illness. “I can—and will—live a full and prosperous life despite this illness,” she says.
Marie encourages new patients to take time to process the diagnosis. Ask questions at your doctor’s appointments and take thorough notes to read later. Try yoga, meditation, dietary changes, and exercise, which are all important in conjunction with medication. Finally, consider acupuncture, biofeedback—which was very helpful for her as she re-trained her body to breathe in a positive way to handle life stresses—or counseling.
Mostly, Marie wants others to know they can live a full, loving, fun, and wonderful life.
“You can have children (if you want them), and a loving relationship,” she stresses. “Talk to your doctors, do research, advocate for yourself, ask for help when you need it, and accept help when your support system offers it.”
Marie is a mom, wife, sister, daughter, colleague, and friend… who happens to have RA/RD. Most likely, pain will be a part of her forever. Knowing she cannot change the fact of her disease, she continually lives as beautifully as she can with it. With incredible people who inspire her—like her mom, Isabel Allende, and everyday people who rise above personal challenges—Marie stays hopeful. She is authentic to her core with a message of love, gratitude, grace, and truth.
“Pain has made me a more compassionate, caring person,” she says. “Life is a struggle, that is true, but it also is beautiful. Maybe I wouldn’t see how beautiful it is without the contrast of the pain. I am so grateful for my family, my husband, my amazing children. I am so lucky in the things that matter most.”