Terri Eggeman was fed up. “I sat down one shift and just cried. I said, ‘I can’t do this anymore,’” Eggeman said. “I’m dealing with pain, I don’t sleep well, I’m exhausted.”
Eggeman had just been diagnosed with psoriatic arthritis. As a surgery nurse, many aspects of the job she’d been performing for years — things such as pushing stretchers, lifting patients, even hauling laundry bags — had become much more difficult.
“I knew I had to advocate for myself now,” she said. “I sat down with my charge nurse and said, ‘I’m having these issues. This is a problem for me.’”
The response brought much-needed relief — both from the physical challenges she was facing on the job and the stress of trying to deal with it on her own. With the help of her supervisor and colleagues, Eggeman said, she made changes to her work routine while still performing the job that made her proud.
“I still pulled my weight, but I could stop and say, ‘I can’t do this. I have a chronic condition, and I need to make these adjustments occasionally,” she said.
Coping with psoriasis and psoriatic arthritis on the job can turn the routine tasks people have performed for years into one tough hurdle after another. Although patients may feel alone in their struggle to keep pulling their weight, in recent years, doctors and researchers have devoted new attention to helping psoriatic disease patients overcome the challenges they face at work.
Psoriatic disease affects career paths
Several recent studies have analyzed how much psoriatic disease can affect someone in the workplace, taking into account things such as reduced productivity on the job, referred to as presenteeism, and absenteeism, or how often people call in sick because of their psoriatic disease.
Dr. William Tillett, a rheumatologist at the Royal National Hospital for Rheumatic Diseases in Bath, England, and colleagues published the results of a study in the August 2014 Journal of Rheumatology that asked psoriatic arthritis patients to measure their productivity loss during the previous week. The researchers found the overall rate of productivity loss to be about 46 percent.
Another study of psoriatic arthritis patients published in June 2014 in the journal Clinical and Experimental Rheumatology reported that about 35 percent of patients felt that their disease had limited their work productivity, and about 14 percent reported that psoriatic arthritis led them to work fewer hours than they wanted to.
Coping with psoriatic disease may impose more limitations on patients’ careers than just reducing the number of hours they can work. A 2014 survey by the National Psoriasis Foundation found that between 5 and 10 percent of people with psoriasis said that their disease had affected their career choices in ways such as turning down a promotion or leaving work altogether.
For people with psoriatic arthritis, the numbers were higher. Twelve percent of respondents said they had turned down a promotion because of their psoriatic arthritis, and 21 percent said had to leave their jobs.
And it’s not just patients who are losing money. The economic burden of psoriasis on the United States is as much as $135 billion a year, according to a study published in January in the journal JAMA Dermatology. The study, led by Dr. April Armstrong, a dermatologist and researcher at the University of Southern California and a member of the NPF Medical Board, found that lost productivity and absences from work due to psoriasis were estimated to cost upward of $4,000 per person annually, or as much as $35.4 billion for the nation as a whole.
According to Tillett, reducing the economic toll of psoriatic disease is an important reason why researchers should examine its impact on work productivity. New psoriatic disease therapies, such as biologics, can be very effective, but they often come with a steep cost, Tillett said. Proving that these treatments can help patients feel better — in all the ways that are needed to get patients feeling well enough to get back to work, he said — can make a strong case for why patients need these drugs.
Putting your treatment to work
The case is already being made. Recent studies show that successful treatment with biologics can improve job productivity in people with psoriasis and psoriatic arthritis. One of the key findings from his 2014 study of work productivity in psoriatic arthritis patients, Tillett said, was the realization that the biggest factor leading to presenteeism at work is disease severity.
“What that means is that if you can potentially ameliorate disease, you could potentially prevent people from losing their jobs,” Tillett said.
In other words, when disease improves, lives improve — including work lives.
Tillett and his colleagues followed their 2014 study with a study examining the effects of various treatments on the work productivity of psoriatic arthritis patients. They found that patients who started a biologic known as a tumor necrosis factor-alpha (TNF-alpha) inhibitor saw a dramatic improvement in productivity.
“Their presenteeism improved by 30 percent over six months,” Tillett said. “It’s really quick.” This rapid improvement occurred no matter how long patients had been living with psoriatic arthritis.
“That’s really interesting, in my view,” Tillett said. “It means that, irrespective of disease duration, if someone has really active disease and they’re struggling at work, if you give them treatment that makes their disease better, they will be more effective at work.”
The TNF-alpha inhibitors examined in Tillett’s study included Humira (adalimumab), Enbrel (etanercept), Remicade (infliximab) and Simponi (golimumab). Although the study did not compare the effectiveness of the different biologics, other studies have investigated biologics individually.
For example, a study published in January 2015 in the journal Annals of the Rheumatic Diseases found that, after taking Cimzia (certolizumab pegol) for psoriatic arthritis for about six months, patients gained about three days of improved productivity each month.
Last year, a study of the effects of Enbrel on workplace productivity, published in August 2014 in the journal BMC Dermatology, found that, after six months of treatment with Enbrel for their psoriatic arthritis, patients were able to cut their sick days by more than half.
These treatments don’t just help psoriatic arthritis patients. According to multiple studies, patients taking biologics for their psoriasis may also experience an improvement in their work performance. In February 2012, a study in the Journal of the American Academy of Dermatology reported that psoriasis patients taking Humira saw about a 60 percent reduction in productivity loss. The year before, in December 2011, a study in the Journal of Dermatological Treatment found that taking Stelara (ustekinumab) for psoriasis — which instead of targeting TNF-alpha, targets different proteins known as interleukin-12 and interleukin-23 — could improve productivity by more than 70 percent.
All in a day's work
Evidence is mounting that effectively treating your psoriatic disease can help you stay on track at work. But other factors play a part, too. In his 2014 study, Tillett and colleagues found that whether patients felt they worked in a supportive environment, with a helpful supervisor, had a big impact on their ability to stay employed.
For some patients, speaking openly with their boss might not be an option. Frank Doris, who works in public relations in New York, has lived with psoriasis since he was 13. Now nearing 60, he’s feeling the aches and pains of psoriatic arthritis. Most days, he can work from home, where he can get up, walk around and stretch as much as he needs to. But when he goes into the office, he said, he doesn’t have that flexibility.
He’s under a lot of pressure to crank out a certain amount of writing each day, he said. Even though he’d like to take a break once in awhile, he doesn’t feel that’s an option.
“I just bite my tongue. I don’t talk about the aches and pains,” he said. “I just would never have that conversation.”
For people who don’t want to discuss their disease with their coworkers, doctors can be a useful resource. Tillett encourages patients to tell their physicians about any difficulties they’re having on the job.
“If you’re struggling at work, I would let your clinician know, so they can do everything they can to support you in that," said Tillett.
Mel Brooke, chair of a patient group for psoriatic arthritis patients in England known as PsAZZ, urges patients to think carefully about what they want to share with their boss, if they do decide to discuss their disease. Writing in a special issue of a PsAZZ newsletter devoted to work and psoriatic arthritis, she suggested, “It’s a good idea to take some time to think about what and when changes are needed before starting a conversation with an employer.”
Patients might request simple changes to their work environment that could improve their productivity.
“Workplace modifications can make a huge difference — they can improve function and productivity, as well as daily working life,” Brooke wrote.
Doris agrees that small changes, such as getting an ergonomic chair, or being able to work a more flexible schedule, could have a big impact.
“Instead of a rigid schedule, let people be more flexible,” he said. “Maybe work a longer day to factor in time when people need to get up, walk around and take a break.”
Eggeman knows that speaking up might be tough for some people.
“People don’t say anything because they don’t want people to think they can’t do their job,” she said.
But she encourages those living with psoriatic disease to be as open with they can. When she changed jobs earlier this year, she told her new boss right away — during the job interview, in fact.
“I felt like that was important. I just put it out there,” Eggeman said.
She emphasized that she’d been living with psoriatic arthritis for a while, and is doing well on her treatment.
“Talk to the boss, and say, ‘I’m still going to be able to do my job,’ I’m still going to be a good employee,” Eggeman said.
Driving discovery, creating community
For more than 50 years, we’ve been driving efforts to cure psoriatic disease and improve the lives of those affected. But there’s still plenty to do! Learn how you can help our advocacy team shape the laws and policies that affect people with psoriasis and psoriatic arthritis – in your state and across the country. Help us raise funds to support research by joining Team NPF, where you can walk, run, cycle, play bingo or create your own fundraising event. If you or someone you love needs free, personalized support for living a healthier life with psoriatic disease, contact our Patient Navigation Center. And keep the National Psoriasis Foundation going strong by making a donation today. Together, we will find a cure.