The Young Face of Arthritis
Stephanie Aleite can’t remember life before arthritis—but she didn’t always have a name for the pain she’s experienced since age 5. Obtaining a diagnosis in a time before Google searches and social media support groups, Stephanie’s parents didn’t know how to explain to their young daughter what was going on inside her body. Instead, they gave her medications and told her they were vitamins. “My parents were told I would grow out of [the arthritis], that it would just disappear,” Stephanie explains. “So they never mentally prepared me.”
While she did experience a period of remission as a teenager, Stephanie’s pain came back with a vengeance after she was in a car accident at age 17. When her symptoms had not improved after many months, she finally learned her pain had a name: rheumatoid arthritis (RA). “I had prepared to go away to college,” she says. “I had these big dreams, never knowing that this was just lurking beneath the surface, waiting to pop out at any minute.”
With her college dreams now on hold, Stephanie started communicating directly with her doctors and doing her own research about RA. Unfortunately, she didn’t get the support she needed from her health care providers at first. She went back to the pediatric rheumatologist she had seen as a child, who predicted that she would “never work a day in her life.” He never even offered her the biologic medications that eventually would get her pain under control.
Another time she fell while using her walker, and her mother took her to urgent care for a concussion. The urgent care doctor questioned her RA diagnosis, decided Stephanie didn’t need a walker, and physically took her walker away. “We were so angry we called the director of the urgent care center and received a formal apology,” Stephanie recalls. “But, boy, was it dehumanizing and hurtful.”
It was this type of stigma that prompted Stephanie, who lives in Miami, Florida, to start her blog, “The Young Face of Arthritis’’ (theyoungfaceofarthritis.com). She has also been on the Dr. Phil show twice and in a Lifetime special, both of which featured her journey with RA. Through sharing her story, Stephanie, 29, hopes to make it common knowledge that young people can get arthritis, too.
“My sincere hope is that no young person will ever have to face the stigma I have faced in health care and among friends and family,” she says.
A supportive partner
While Stephanie struggled to find supportive health care providers, she met Andres Aleite, the man who would eventually become her husband. They met while working at the mall—Andres at the Apple store and Stephanie at the Brazilian cafe next door, her first job. “He came in every day for a ham-and-cheese croissant and coffee,” Stephanie shares. “He was my best customer.” One day they saw a commercial for a biologic medication, and with Andres’ support, Stephanie found a new rheumatologist. That doctor prescribed a new medication at her first appointment, and shortly afterward, she was able to walk unassisted again, after needing to use a wheelchair or walker daily for almost two years.
Stephanie and Andres got engaged, but a month before the wedding, the first biologic medication stopped working. “I was completely shocked,” she confesses. “You see all these successful stories, so it’s really disheartening when [medication stops working] the first time. And every subsequent time thereafter. But it’s toughest the first time.” She ended up needing to use a wheelchair on their honeymoon.
The traditional marriage vows, “in sickness and in health,” were tested early in their marriage. Stephanie tried another biologic, was forced to quit her job, tried a third biologic, went on disability, tried a fourth biologic, and then a fifth. Sometimes her insurance wouldn’t pay for the expensive medications, and she couldn’t always afford to pay out of pocket.
One thing was constant: Stephanie had Andres by her side through it all.
Pregnancy and parenthood with arthritis
Eventually, Stephanie and Andres decided to have a child. While she would have liked to go without medications while pregnant, it wasn’t practical. “I had to balance between what’s best for [the baby] and what’s best for me,” she explains.
While the couple was thrilled to welcome baby Santiago to the family, early motherhood was also challenging due to RA. “It was really important to me that I breastfeed,” Stephanie shares, “because I didn’t know if this would be my only child and I wanted to have that experience.” While her rheumatologist preferred she focus on treating her RA, he did his best to support her wishes, prescribing only breastfeeding-safe medications.
After five months of breastfeeding, Stephanie realized it was time to stop so she could treat her RA more aggressively. While weaning was difficult emotionally, ultimately having her RA under control has given her more time to play with her son, hold him without pain, and just enjoy being with him.
Words of wisdom for chronically ill moms
After nearly three years of experience as a mom with a chronic illness, the most important lesson Stephanie has learned is to be willing to change your mind. “I think you have a list in your mind of what you’re going to do and what you’re not going to do as a parent,” she explains. “I think it’s important, if you’re a mom with a disability, to be open to that list changing as you go and as [your child] grows.”
For example, Stephanie didn’t plan to co-sleep with her son in the same bed. But as she struggled with her joint pain as a new mom, it became too difficult to get in and out of bed all night long. “I put him in my bed and never looked back! I needed to rest. Don’t feel guilty about changing your mind about something,” she advises.
Stephanie has also learned that self-care begins with self-love and forgiveness. She has forgiven herself for being a mom with RA, and for sometimes needing to change her mind to accommodate her pain. She has also learned to truly appreciate the good days. “Nothing ever stays the same,” she says. “It’s always changing, which means as much as there’s a possibility for more bad days, there’s an equal possibility for good days, too.”
She has already started to explain arthritis to her young son. Recently she had a bad flare-up, so she told her toddler she had a boo-boo, and they watched a movie in her bed together. Instead of her day being ruined by pain, it became a treasured memory of time spent with her son. “My heart felt so full,” she says. “He was so gentle with me, and so kind. I thought, ‘I did something right.’ He has empathy for such a little person.”
Working to help others with chronic illness
Stephanie has also been willing to change her mind when it comes to the trajectory of her career. Although she didn’t go to college when she had hoped, she recently graduated with a bachelor’s degree in psychology. She is currently pursuing a master’s degree in social work, with the goal of becoming a psychotherapist who specializes in disease and disability. “RA has enhanced my ability to listen and have empathy with zero judgement toward others,” she says.
“I used to say that when you have a chronic illness, you go through the five stages of grief over and over and over. But I genuinely believe in my heart that I am over it. I’ve accepted it. This is who I am. I’m learning to live with it and thrive.”