- Lupus is an autoimmune illness in which your body fights itself, causing widespread damage to body organs such as the joints, skin, brain, lungs, kidneys, and blood vessels.
- Sometimes the body seems out of control; the internal, invisible fights can be devastating.
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I have lived with systemic lupus erythematosus (SLE), or Lupus, for six years.
Lupus is an autoimmune illness in which your body fights itself, causing widespread damage to body organs such as the joints, skin, brain, lungs, kidneys, and blood vessels.
Sometimes the body seems out of control; the internal, invisible fights can be devastating.
Every day is a new battle in a new place with unpredictable pain levels.
Symptoms
Working in a fast-paced environment can be challenging.
Lupus, with its debilitating symptoms like brain fog, fatigue, and pain, can become an obstacle to productivity.
Sometimes you are tempted to call in sick or deliberately run late.
Work schedules, deliverables, tasks, and deadlines can be hard to achieve.
There are highs, lows, good and bad days.
Brain fog is confusion, forgetfulness, and a lack of focus or clarity.
You must learn to minimize distractions, avoid multitasking, establish a suitable pace for tasks requiring concentration, and use visual cues.
This helps ensure that you do not overlook essential tasks.
Fatigue is a common symptom of Lupus and can lead to a flare-up.
I always prioritize and schedule high-priority tasks when I have high energy.
Having frequent rest periods helps rejuvenate and take off some pressure.
A flexible schedule helps during the times of the day when I have less energy.
I can start my day later in the morning if I get up on any given morning and cannot function optimally.
It is also important to enlist help by delegating so that you can focus on critical tasks that require your attention.
A good support network both at home and in the workplace is equally invaluable.
Lupus is anti-stress and anti-pressure.
Any minimal stress can trigger a flare-up or worsen the symptoms.
Making self-care a priority can help reduce workplace stress and stress-relieving activities like yoga, meditation, light exercise, and effective planning.
The culture of work-life balance is slowly making life with chronic illness endurable.
Most organizations are promoting this culture to help curb mental health issues.
However, with the new remote working structure, sometimes people work for longer hours without noticing.
Coping with Lupus at Work
Lupus management might be difficult whether a person works full-time or part-time.
Most of the time, you cannot predict when or how severe your symptoms will be.
Many people with Lupus can still continue working by adjusting their workplace environment.
This may involve adjusting the workstation to reduce physical stress factors, such as employing ergonomic keyboards and a chair with strong lumbar support, additionally having a couch for rest breaks, light shields over fluorescent bulbs, and antiglare filters for computer screens.
I had scepticism about disclosing my illness to my employer, supervisor, and colleagues.
I was apprehensive that it might question my effectiveness and lessen my value as an employee and team member.
The physical and mental demands of one's job may become overwhelming, coupled with the many physical and emotional changes that Lupus can cause.
Confronting this work-related issue calls for disclosure and adjustments.
Many organizations prioritize workplace health and safety to keep their employees safe.
A healthy workplace not only prevents incidents but also promotes overall employee well-being.
At the African Population and Health Research Center (APHRC), there is strong support from the executive leadership for the importance of a healthy workplace.
APHRC promotes a culture shift in work-life balance and has a dedicated health and safety committee that includes employee involvement in designing the program.
The human resources team also encourages using the employee assistance program, which provides a platform for counselling services.
Employers support
Organizations can consider providing sensitivity training for supervisors on the scope and nature of chronic conditions.
Providing confidential and collaborative approaches to tailoring work schedules and environments for people with chronic conditions.
They can make “reasonable adjustments” in the workplace to prevent employees from being treated less favourably than others for reasons related to their disability or progressive conditions.
Similarly, agree on flexible work policies that can help many individuals who are incapacitated and occasionally unable to work due to chronic ailments.
Employee obligation
Depending on the severity of the chronic illness, an employee may wish to disclose the information to their supervisor or Human Resources, especially if it impedes their performance.
If an employee expects their illness to conflict with their work schedule or responsibilities, it is imperative to alert their supervisor early to help plan, reassign, and make accommodations.
However, unless one feels comfortable doing so, there is no need to discuss sensitive details.
Navigating life and work with a chronic illness can be challenging. It can be difficult to disclose such conditions at the workplace to avoid discrimination.
People with Lupus can remain productive in the workplace with a few adjustments, like scheduling rest periods, prioritizing, flexible work conditions, work-life balance, and support from employers, colleagues, and supervisors.
May is Lupus awareness month. The writer is a Lupus champion who works at the African Population and Health Research Center.