Young Adults Living With RA
When rheumatoid arthritis strikes decades earlier than usual.
Draining Diagnosis continued...
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?”
With careful planning and monitoring, most patients can have successful pregnancies. According to Manno, half of patients experience a remission of symptoms during pregnancy, while the other half go into a flare.
Some patients who are already parents struggle to handle the responsibility. Kayla Rae, a 29-year-old single mother from Louisiana who was diagnosed in 2010, says the most difficult part is the guilt that she lives with. “I know my daughter’s life would be different if I felt better,” she says. “RA tends to influence every decision I make. Something as simple as grocery shopping may be all that I can do in one day.”
Feelings such as denial and frustration are common among RA patients. Miceli struggled with her emotions when she was first diagnosed. “I felt so angry,” she says. “I kept wondering why did this happen to me now, at this stage of my life. This isn’t fair, what did I do to deserve this?”
RA has made it harder for Miceli to enjoy old hobbies like tap dancing and kayaking with her husband, and she will likely be on prescription drugs to treat her RA for the rest of her life.