When Shannon Coleman was diagnosed with ankylosing spondylitis (AS), she was surprised by how hard the condition hit her.
“I’d had issues with my back for more than 10 years before I finally got a diagnosis in May 2014,” she says. “I thought I’d be prepared because I work in the health care field -- I’m a medical assistant at a spine clinic -- but I was struck by how debilitating it was to suddenly not be able to live my normal life as a working mom.”
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Coleman, like many other people with AS, had to learn how to get the support she needed at home and at work. While asking for help can be tough, there are ways to make it a bit easier -- in general, at work, and at home.
Put aside any feelings of guilt. You might have trouble with the idea of asking for help, says Susan Goodman, MD, a rheumatologist at the Hospital for Special Surgery in New York.
“When people first get diagnosed, they’re typically adults at the peak of their physical competence, often with young families, and then suddenly they’ve become debilitated by this illness.”
Keep in mind that once you start treatment, many of the worst symptoms may lift, Goodman says.
“The overall outlook for AS has significantly improved in the last few years. The medications available today, particularly when used in conjunction with physical therapy and exercise, can go a huge way toward restoring an active lifestyle.”
Explain that AS can be an “invisible” disease. “You can look at me and say, ‘She’s healthy, she’s great, I don’t see anything wrong,’” Coleman says. “But that’s not always true.”
Coleman notes that friends, family, supervisors, and co-workers often need to be educated about how challenging this disease can be, even when people with it don’t look sick.
Remind people that even if you seem fine, you could still be struggling, and you may need their help to get through those tough days.
Be open about your pain level every day. Symptoms of AS can vary greatly from person to person and from day to day. One strategy that Coleman uses is to rate her pain level for her husband and daughter each day, using a scale of 1 (mild) to 10 (severe).