What’s it like to work while dealing with an autoimmune disease?
At the 2016 Chronic Disease at Work conference on June 22 in Toronto, Dawn Richards, who has rheumatoid arthritis, and Zal Press, who has Crohn’s disease, shared their stories about working with autoimmune disorders.
Richards said health appointments began to dictate her life following her diagnosis. And to cope with fatigue at work, she had to take a midday nap.
“If there’s any way you can make concessions or you can be flexible in the workplace when you know someone has an illness like this, it can make a really big difference,” she said, citing the role of the employer in providing support.
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At the time of Richards’ diagnosis, she had a great benefit plan that gave her 100 per cent coverage for prescriptions, massage and physiotherapy. “That was really one less thing for me to worry about in all this chaos,” she said, noting things changed when she switched to an employer with a 20 per cent co-payment in her new plan. “That freaked me out to no extent,” she said.
Richards said while employees don’t think about benefits plans until they need them, having good coverage was key for her. “It might seem like a little thing but it’s immensely helpful,” she said.
Jacob Moore, another patient living and working with psoriasis and ankylosing spondylitis, says his condition affected his job because his daily tasks became harder to complete and he began missing work when he was feeling sick.
Moore says having full benefits coverage motivated him to get treatment and take sick leave to recover. But while the benefits made the process easier, he says he eventually was away from work long enough that his plan no longer covered him. And once he was back at work, he had to work for a defined period before he could receive his benefits again.
In his case, a patient support program stepped in to cover his medication while he couldn’t get it covered through his work, which allowed him to continue getting treatment until he qualified for benefits again. “I was worried for a bit until they stepped in. And yeah, they took care of everything,” he says, noting he has now returned to work.
Speaking at the Benefits Canada event, both Richards and Press described how their conditions could create uncomfortable situations with co-workers.
Press noted he would suffer from alternating fever and chills at work that attracted attention from co-workers. “Everybody spoke to me differently, everybody looked at me differently, as though they were waiting for me to perform some sort of supernatural act,” he said.
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Given the reactions, Richards said she understands why people may not want to be open about their conditions. “I totally get that. You are painted with a different brush.”
In light of the concerns, she highlighted the importance of creating a safe work environment where people can feel they can disclose their situation.
Moore, too, offers his message to employers: “Anyone with an autoimmune disease is still very capable to work, and unfortunately what they have is lifelong, but they still definitely can be a productive member of society.”