Working With Axial Spondyloarthritis
Reviewed by: HU Medical Review Board | Last reviewed: March 2023 | Last updated: April 2023
Axial spondyloarthritis (axSpA) is a condition that often starts in the late teen years or young adulthood. As the condition progresses, axSpA can cause joints to join together (fuse). It can also lead to severe chronic pain, stiffness, and fatigue. Some people with axSpA have significant changes in how they can move their bodies and how flexible they are.1,2
This can greatly impact the time of life when people are usually active and most productive. The disease can have a big impact on a person's career, lifestyle, family, and social life.1,2
If you have axSpA, navigating the workplace may be difficult. This can be especially true if your symptoms are not well controlled. However, certain accommodations might help make your job more manageable. With the proper support, you can continue to succeed in your career while living with axSpA.1,2
How does axSpA affect people in the workplace?
The pain and fatigue that come with axSpA can make it hard to do your job. Going to school or work every day when you always feel tired is difficult. Those with axSpA also may face stigma or misunderstanding when they miss work or need somebody to fill in for them on certain days. But employers are required by law to make fair changes for employees with this condition.1
Up to 1 in 4 adults in the United States lives with some form of disability. And as the population ages, that number is expected to rise. Many companies are now looking for ways to become more accessible and accommodating to employees with disabilities.3,4
The Americans with Disabilities Act (ADA) requires employers to provide reasonable accommodations for employees with disabilities. This might mean making changes to the way a job is done or providing equipment or devices that help an employee perform their duties. Accommodations can vary for each person, but common examples include:3,4
- Flexible work schedules – Allowing employees to set their own hours or take advantage of flex time can help accommodate their needs.
- Accessible office space – For people with axSpA, this might mean providing more ergonomic workstations or other seating options that reduce stress on the body.
- Assistive devices – These can range from a simple magnifier to computer software that reads text aloud. For example, if you have to drive for your job, you may need extra-wide side or rear-view mirrors to reduce the strain on your neck and back.
Financial effects of axSpA
Living with axSpA can have a significant impact on your finances. While everyone's experience is different, healthcare costs can make it hard to stay afloat financially. Drug costs, medical equipment, and expenses related to doctor visits and treatments add up quickly. It also can be a challenge to keep up with monthly payments for basic living expenses as well as any extra costs associated with managing axSpA.5
All of this is made worse if you have to miss a good deal of work or pass over promotions because of your condition. But there are resources available to help lighten the financial burden.5
Family and Medical Leave Act
The Family and Medical Leave Act (FMLA) is a law that makes sure people can take time off from work for family or medical reasons without losing their job. It provides peace of mind to those dealing with illness, caring for a loved one, childbirth, or adoption.6
FMLA allows people to worry less about work when they are going through a tough time. This law is important because it lets employees focus on what is most important to them and gives them the support they need when life gets difficult.6
You can get the FMLA paperwork from your employer, and your doctor will need to fill it out. The amount of time off you can get depends on how sick or injured you are. Not everyone qualifies for FMLA, but it is worth researching if you or a loved one are affected by axSpA.6
The Social Security Administration (SSA) is a branch of the US federal government that provides disability benefits to people who cannot work due to long-term disability. Severe axSpA is one of the conditions that is recognized by the SSA.7
To apply for benefits, you will need certain information and several documents, including:7
- Your Social Security number
- Your birth certificate
- Contact information (names, addresses, and phone numbers) for doctors, caseworkers, therapists, hospitals, and clinics where you have been treated
- Names and dosages of all the medications you take
- Medical records and lab results
- Dates you were seen, tested, or treated for your condition
- A copy of your most recent W-2 (or most recent tax return if you are self-employed)
- A summary of where you worked and what kind of work you did, including the dates you started and ended your employment and the tasks you performed in each position
Finally, some people find it helpful to hire a disability lawyer. Applying for disability can take many months, and many people are denied benefits when they first apply. Disability lawyers are familiar with the details and may help ease the application process.8