After Juvenile Arthritis, Finding Work is a Challenge

PHOTO: For Ashley Boynes-Shuck, pictured here, arthritis has made full-time employment a real challenge.Jenn Collins/Jai Lynn Photography
For Ashley Boynes-Shuck, pictured here, arthritis has made full-time employment a real challenge.

For Ashley Boynes-Shuck, 28, of Pittsburgh, working a full-time job has always been a pain – literally. Boynes-Shuck was diagnosed with juvenile arthritis when she was 10 years old. Now as an adult with rheumatoid arthritis, the unpredictable fatigue and pain of her condition makes working difficult.

"The unpredictability of it is why I don't work a regular job because I cannot commit to a regular schedule," she said.

Boynes-Shuck's arthritis affects every joint in her body. Pain in her hands and shoulders makes typing or driving for hours at a stretch impossible. Standing up for long periods of time leaves her tired and in pain. Even sitting at a computer for hours at a time is too much of a strain for her shoulders, neck and back. Finding a full-time career to accommodate her arthritis has been a challenge.

Despite a 4.0 grade point average, she dropped out of a graduate program in education because she realized she'd never be able to meet the physical demands of a teaching career. Instead she now works as a freelance social media consultant, a job with a more flexible, less strenuous schedule.

"It's not the amount of money I would have wanted to be making. It's a different path than I would have taken," she said. "The picture of what I want to do has changed a lot, and it was all because of my health."

Boynes-Shuck's problems are familiar ones for many young adults living with arthritis. Now researchers in Great Britain have confirmed what many of those young adults already know. It found that having juvenile arthritis in childhood makes it more difficult to be successfully employed as an adult.

It's something Dr. Patience White, vice president of public health for the Arthritis Foundation also knows. She says even a good education may not be enough to overcome the challenge of a disability that begins in childhood.

"The real issue is they haven't had enough pre-employment experience, whether it's babysitting, volunteering or working a paper route," she said. "What happens to kids with chronic illnesses is they don't get to do that."

Almost 300,000 children in the U.S. have juvenile arthritis, according to the Arthritis Foundation. Past research has found they experience higher rates of unemployment as adults than their healthy peers.

Today's study, published in the journal Arthritis and Rheumatism, found that the degree of disability matters. The study followed 103 adult patients who had been diagnosed as children with juvenile arthritis. People who suffered greater disability as children accomplished less as adults. They were less likely to be employed and they found it harder to hold the jobs they got. The majority of those who were unemployed said their disease was the reason they couldn't find work.

White says the study shows children growing up with juvenile arthritis will need special guidance from parents and professionals as they set their goals.

"You want young people to get as much education as they possibly can, and think about their functional status and what the job requirements are so they don't set themselves up for failure," White said.

Boynes-Shuck said even though her career hasn't turned out exactly as she thought it would, she still gets enjoyment from her success and work and her advocacy for people with arthritis. She said other children growing up with the disease should never be discouraged from trying to reach their potential.

"They need to try their best and if it doesn't work, that's OK. You just have to adapt and find things that will work. But you should never just give up," she said.