Young Adults Living With RA
When rheumatoid arthritis strikes decades earlier than usual.
Draining Diagnosis continued...
“The diagnosis is overwhelming for young adults, who in most cases think they are invincible, and haven’t had any experience with the health care system,” Manno says. “Medically, you have to think aggressively -- someone who is 20 has a lot of years to develop damage from the disease.”
Before she found the right mix of medications, Theresa White, 29, an office manager from Williamsport, Pa., couldn’t function normally. “Ironically, my 70-year-old mom had to take care of me,” she says. Even now, White is only able to work part-time and is unable to participate in activities she used to enjoy like Pilates. “It’s hard for me to do most things normal 20-somethings do,” she says.
Emotionally, living with RA can be difficult. Major life events such as finishing school, establishing a career, and starting a family are often delayed if the disease flares up. Young people say there is often a stigma associated with having the disease. “When people hear RA, they tend to think of their grandmother’s twisted-up hands," Manno says.
Christina Iversen, 20, a college student at Baylor University in Texas, says her friends and teachers have no idea that the disease can affect young people. “It is so frustrating to explain to my friends why I am in too much pain to go to the lake for the weekend,” she says. “Sadly, when my joints need to be wrapped up, more people believe me.”
Iversen has lived with RA since she was 4 years old, but adulthood brings about a whole new set of challenges. The pre-med major who still experiences flares-ups, fears she won’t have the dexterity or stamina to pursue a specialty like surgery.
Iversen takes medication when she has symptoms, and she also tries to manage her disease by exercising, strength training, swimming, and doing yoga. Manno recommends that patients stay active. “This maintains muscle mass and will not hurt their joints — it will preserve their function,” she says.
Because RA affects three times as many women as men, many 20-something women with RA are concerned about having a family. “The diagnosis brings up so many questions,” Miceli says. “Will this medication cause birth defects? Will I be able to conceive? How will I handle taking care of a child with my disease?”