Last winter, after spending a few afternoons shoveling snow, Heather Miceli, 27, woke up in the middle of the night and couldn’t get out of bed. “My joints had swelled up so much that I couldn’t move without crying,” she says.
Two months later, the college professor at Johnson and Wales University in Providence, R.I., who had always been healthy, was diagnosed with rheumatoid arthritis (RA) -- a debilitating autoimmune disease that causes inflammation and swelling in the joints and surrounding tissues, most commonly in the wrist, fingers, knees, feet, and ankles. Other organs such as the lungs, skin, and eyes can also be affected.
“It came out of nowhere,” says Miceli, who started experiencing severe fatigue, joint pain, and stiffness. “My husband had to dress me. My hands were so swollen that I couldn’t wash dishes or grade papers. I was so scared. I didn’t know what was happening to me.”
RA in Young Adults: How Common?
Miceli’s plight is more common than you may think. RA, which affects 1.3 million people in the U.S., is typically diagnosed between ages 30 and 80, but also occurs in young people.
“The chance that a young adult will develop RA is more common than previously thought,” says Cynthia Crowson, MS, a Mayo Clinic biostatistician and RA researcher who recently published a paper in Arthritis and Rheumatism on the lifetime risk of developing several autoimmune rheumatic diseases. Crowson says that the odds of someone in their 20s developing RA is 1 in 714 for women and 1 in 2,778 for men.
Certain factors can increase that risk. According to Rebecca Manno, MD, MHS, a rheumatologist at Johns Hopkins University School of Medicine, smoking increases the chance of developing RA if a person is already genetically susceptible to the disease. Family history, she says, is another important risk factor, because autoimmune diseases tend to run in families.
Manno says young adulthood is a particularly difficult time to be diagnosed with RA, both physically and emotionally. For many patients, the pain and joint destruction the disease causes can be managed with medications such as disease-modifying antirheumatic drugs, anti-inflammatory drugs, and steroids. Many can have side effects such as liver damage, weight gain, and increased susceptibility to infection.
“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?”
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.
But she tries not to let the disease stop her from doing the things she enjoys most. “On good days, when I am teaching and in my element, sometimes I even forget I have RA. But still, there is no escaping the fact that life is going to be a constant struggle from here on.”
It's important that RA patients who are struggling with their emotions understand that they are not alone. “We remind patients that the feelings they are having are normal and that there are other patients out there who are going through the same thing,” Manno says. “It is very important that patients have a strong support network.”
Some patients turn to their family members and friends, while others find comfort in support groups. Manno suggests contacting the Arthritis Foundation to find a group in your area. Individual counseling is also an option for patients who are depressed or anxious.
It is also important to be educated about the disease and share your knowledge with family and friends. “The more patients know, the better they can manage,” says Eric Matteson, MD, MPH, chair of rheumatology at the Mayo Clinic. “It helps to take the fear out of the disease when you understand it better, and when you know that there is a lot which can be done for it.”