How to Get Ankylosing Spondylitis Support

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.”

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.

In General

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).

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“If my pain level is a 2 or a 3, they know to let me be,” she says. “If my pain is a 6 or 7, they know I need some help. If my pain is a 9 or 10, they understand that they will need to do a lot of things for me.”

Talk about how much help you do -- and don’t -- want. Nobody likes to be treated like a sick patient all the time. On the days that your pain and fatigue are minimal, you might want to go about your normal daily routine without a lot of help.

If you’re longing for more independence, be open with your loved ones. It might be as simple as setting up a code word to use when you’d like them to back off and let you do things on your own.

Be specific about your needs. Whether it’s help with chores like laundry or grocery shopping, or more frequent breaks at work, it’s important to explain exactly what you need up front.

“I’ve seen patients where the families aren’t doing enough to help them, and I’ve seen patients where the loved ones go overboard, literally carrying them from room to room,” Goodman says. “Open and specific communication is key to getting the right level of support.”

At Work

Don’t hide your diagnosis. It’s best to be up front and honest with your employer. “If you’re missing work due to doctor’s appointments, or you’re not able to perform your job in the same way, your employer needs to know what’s going on,” Goodman says. One of the hardest parts may be deciding to bring it up.

“In my experience, most employers are happy to work with a valuable employee to keep them on the job,” Goodman says.

If you’re worried about bringing it up, consider talking to a lawyer beforehand, so you’re clear on your rights. Employers of a certain size have to provide reasonable accommodations and cannot fire you, lay you off, or reduce your pay because of a disability.

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Time your conversation well. Don’t wait until your office is busy or filled with customers before you pounce on your boss to ask for breaks. Set aside a private time to talk with your employer about your diagnosis and any special needs before they arise.

“Employers usually want to help, but they also want you to be productive, and you might have to assure them that you’ll do your best to maintain your workload,” Coleman says.

If it helps to get up and take a short walk every hour, for example, maybe you can use that time to deliver a package to someone on the other side of the building.

Make small improvements to your workspace. If you have a desk job, ask about getting an occupational therapist or other professional to check your workstation. A workstation that’s set up well can help good posture and make it easier to sit for longer periods of time. Some large employers may offer this service -- called an ergonomic assessment -- free of charge. In other cases, your insurance may cover an assessment.

Other ideas, like using a heating pad, can help relax and loosen stiff joints. Try storing one under your desk for days when you need extra relief.

At Home

Connect with other people with AS. Joining an AS support group or community -- either in-person or online -- offers a forum to discuss day-to-day challenges and treatment options. It’s where you can receive emotional support from people who’ve been there. Talk with your doctor about finding a support group near you, or visit the web site of the Spondylitis Association (spondylitis.org), which provides information about patient support groups and hosts a network of message boards.

If you have kids, find ways to let them help. Coleman says that sometimes it’s hard to let her 12-year-old daughter help out.

“I feel like I’m the mom so I should be the one helping her,” she says. “But my daughter loves to feel like she’s doing something for me.”

Their solution: Coleman’s daughter gives her a back massage every evening. “It’s something she can do for me that we both enjoy, and it gives us a little extra close time together.” Think about a special way that your child can offer support -- and feel meaningfully involved.

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WebMD Feature Reviewed by David Zelman, MD on December 29, 2016

Sources

SOURCES:
Shannon Coleman, AS patient.

Susan Goodman, MD, rheumatologist, Hospital for Special Surgery; associate professor of medicine, Weill-Cornell Medical School.

National Institute of Arthritis and Musculoskeletal and Skin Diseases: “What is ankylosing spondylitis?”

U.S. Equal Employment Opportunity Commission: “Disability Discrimination.”

Spondylitis Association of America: “Patient Resources: Support Groups.”

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