Working a job while also managing a rare disease or chronic condition can be tough. Symptoms can be unpredictable, employers don’t always understand and doctor’s appointments can often be had only in the middle of the workday.
But don’t let a diagnosis derail your plans to hold down a job or develop a career. Here are some career tips that will help you set yourself up for success.
- Start by choosing the right kind of work.
To be successful, you should take a job that is something you can physically do and that you have the stamina for. Christine Miserandino’s “spoon theory” is one way to assess how much energy you have for work outside the home.
But also know that you can ask for reasonable accommodations, such as sitting instead of standing. The United States has the Americans With Disabilities Act (ADA) and more than 100 countries worldwide have passed similar Disability Laws and Acts.
Here are some common accommodations that can be requested:
- Accessible parking
- Modified equipment like an ergonomic chair, or a headset for phone calls
- Transcription software or visual aids
- Assistance from a service animal
- Know the employer’s rules about sick time, work hours, flexible schedules and remote work.
Some of these accommodations will be covered under the ADA in the United States and disability laws elsewhere. Your employer’s Human Resources department can answer questions and let you know about what happens if you max out paid sick time. Ask questions like: Can you switch to part-time work, if necessary?
- Share what you’re comfortable sharing with employers and coworkers.
People have different comfort levels when it comes to sharing information about their condition. If you share specifics about your health, that gives colleagues and your employer a chance to empathize and support you. It will give them informed expectations, and it will make them aware that they’re operating under disability employment rules. Most importantly, if you have a serious condition, it could be important that others know in case you fall ill at work.
Under the ADA and similar laws, people with disabilities are protected from discrimination. In the United States, employers with 15 or more employees are required “to provide qualified individuals with disabilities an equal opportunity to benefit from the full range of employment-related opportunities available to others.” That means you don’t have to disclose any disability when interviewing, and even if you did, an employer can’t deny you employment, pay you less, or fire you because of your disability.
If you share your condition with a manager, you can use it as an opportunity to coach them on how to best support you. A leadership expert wrote in the Harvard Business Review that managers should get better acquainted with the challenges faced by so many employees who come to work burdened by chronic health conditions. In one study, more than half of cancer patients said that their workplaces were not prepared to support their needs.
Managers and workplaces might even learn something from patients who live with chronic conditions, who are often are often “masters of self-awareness and energy management,”
Alyson Meister wrote in Harvard Business Review.
“Health, wellness, and energy management is an important and unaddressed need of all employees,” Meister said.
