Finding her voice in patient-doctor talks and gaining confidence in it happened for Allie Greenfield when she was in her mid-teens. Speaking up for herself and being heard, what she calls “running her own health care,” became necessary when Greenfield, now 24, felt that a doctor was misdiagnosing her.
“When I was sixteen, I started seeing a doctor who believed the pain I was having was from fibromyalgia, not the polyarticular juvenile idiopathic arthritis [JIA] I’d been diagnosed with when I was fifteen months old,” Greenfield says. “I really disagreed, but I was sixteen years old, and I didn’t go to medical school, so it was like, what did I know?”
Greenfield’s mom and dad both liked her new doctor, who they had found after trying several others. Greenfield, however, didn’t feel the rheumatologist was listening to what she was saying about her symptoms and her experience of her own body.
“We’d leave the appointment and mom would look all positive and say, ‘So, how do you think that went?’ And I’d say, ‘It was terrible,’” she says. Still, her parents wanted Greenfield to “give the doctor a shot.”
She tried, but after another unhelpful appointment, Greenfield told her mom, “I need a second opinion.”
It took time and effort to convince her parents, but Greenfield got her second opinion. That rheumatologist confirmed what Greenfield had known all along. She had JIA, not fibromyalgia.
Gaining Confidence, Taking Charge
Being right about her diagnosis and standing her ground with her parents was a major turning point for Greenfield.
“When it did come out that I was right, I got a lot of affirmation, and things just kind of snowballed,” she says. “I had more confidence when I had to say to the doctor and or to my
As she took over more of her own care, Greenfield learned some things. She found it saved time and made appointments run smoother when she could easily answer questions about her medical history her recent symptoms, the drugs she’d tried, how well those medications had worked and what side effects they’d caused.
“I put together a binder to take to my appointments that has notes about my previous doctors and medications,” she says.
She also realized why it’s so important to stay on top of her own care. “You have to know what’s going on because if you don’t, no one else is going to do it for you,” she says.
Even though she’s been managing her own care for years, Greenfield still occasionally asks one her parents come along to an appointment.
“It’s helpful to have that second set of eyes and ears,” she says. “They may see something that I don’t realize, like that I’ve been limping more than usual, or remind me of something I wanted to ask about.”
When it comes to making the transition to adult health care, Greenfield stresses, “Start talking to your doctor directly early on earlier than I did at sixteen. It’s important to start young, while your parents are still there. It’s easier to build confidence when you have back up before you are actually on your own.”
She also wishes her parents had pushed her harder early on to get more involved in her care.
“My mom tried, but I was a quiet person, so I was not open to sharing much,” she says. I know some parents don’t want to push their kids, but the more practice they have, the more comfortable they’re going to be saying to a doctor, ‘This is actually happening. I am having this issue.’”
In 2017, Greenfield earned a master’s degree in business administration and is now a forensic accountant. She advises young adults with arthritis who are pursuing higher education to check in with their college or university disability office when they start school.
“They can help with accommodations. And be upfront with professors about your arthritis,” she says. “I was in a wrist brace during finals week once, and I told a professor I wasn’t sure I could hand-write the entire exam. He was very understanding because he already knew about my arthritis.”
Greenfield, who has been involved with the Arthritis Foundation since attending JA Camp as a child, spoke about health care transition at a 2018 JA conference. Her advice to an audience full of peers: “Keep looking until you find a doctor you and not just your parents are comfortable with; one who listens to you. While it’s important for parents to be comfortable, it’s your care.”