Workplace Accommodations and Navigating Disability With Ankylosing Spondylitis
Ankylosing spondylitis (AS) often begins in adolescence or young adulthood, significantly impacting the time of life when people are often active and most productive. The disease can have long-reaching impact on the individual’s career, lifestyle, family, and social life. As the condition progresses, the inflammation of AS can cause fused joints and severe chronic pain, stiffness, and fatigue. While there is wide variability in the progression and severity of AS in different people, some people experience significant changes in their mobility and flexibility. These symptoms may necessitate adaptations in the work environment, a change of jobs, or in some cases, applying for disability benefits.
How ankylosing spondylitis affects work
People with AS can and often do work. However, for some people with AS, the disease progresses to a point at which work is no longer feasible. Researchers have found that people with AS who are more likely to continue working are those who have found effective coping mechanisms, those who pace themselves and recognize their activity limitations, and those who get vocational counseling and job training. Factors that are more associated with those who leave the workforce include workplaces that cannot or do not provide technical or ergonomic adjustments, insufficient support from colleagues or management, and reduced transportation mobility at the workplace.1
Although estimates vary, one study found that after 25 years of having AS, two-thirds of people were still working full-time, and half still had their original jobs. However, another study found that many people have to change jobs completely due to their disease and its effects on their body, with some changing to careers that are less satisfying.2
Fatigue is one of the biggest challenges affecting a person’s ability to work. Many people with AS report finding it difficult to make it through a full work day, let alone a full work week. Combatting this fatigue at work may use up all a person’s energy, leaving them little to none after they arrive home. Pain and stiffness also take a toll, and the unpredictability of how a person will feel can make it challenging to deal with a workplace that isn’t flexible.2
Workplace adaptations may be needed
Working in a monotonous posture – the same position for a long time – can cause pain in someone with AS. People with AS may need more flexibility in both position and work hours, as longer hours may be difficult.1 Work stations may need to be ergonomically designed and arranged to give a good range of movement while sitting or providing an option to alternate between sitting and standing. Some people switch to working from home or becoming self-employed gives them more flexibility.2
Ankylosing spondylitis can have a negative effect on finances
Because AS can impact types of work as well as how much a person works, it can have a significant impact on finances. People with AS may experience a reduction in their earnings due to working fewer hours, and they may voluntarily or involuntarily experience a loss of promotion opportunities. (One survey found that some people avoided promotions due to the perceived extra pressures and extra work that would come with them.) In addition, there may be additional costs for the working person with AS for assistive devices.2
People with AS may need to miss occasional work days for flares of pain or physician appointments. FMLA paperwork can be obtained from employers and filled out by a patient’s physician which can allow them days off from work on a regular basis as well as reduced hours or limitations based on the severity of their AS.
Applying for disability benefits
The Social Security Administration (SSA) is a branch of the U.S. federal government that provides disability benefits to individuals who cannot work due to long-term disability. Severe AS is one of the conditions that is recognized by the SSA. To apply for benefits, you will need information and several documents, including3:
- 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, and/or treated for your condition
- A copy of your most recent W-2 (or most recent tax return if you’re 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
Some people find it helpful to hire a disability lawyer to help with the process. The process can take many months and many people receive denials when they first apply. Disability lawyers are familiar with the process and may help ease the application.