Thriving at work

Job selection

Living with a chronic illness can present challenges when searching for a job, but there are many ways to work in a field you are passionate about.

Here are some tips to find the right job for you:

• Focus on your skills and strengths, and look for job opportunities that allow you to utilize them.
• Keep a positive attitude and display initiative and self-motivation during the job search process.
• Remember that everyone has limitations, and don't let your chronic illness define you or limit your career aspirations.
• You don't have to disclose your chronic illness during the job search and application process unless it affects your ability to complete essential job functions.
• After you are hired, you can request accommodations if needed, but you are not required to disclose your chronic illness unless you are requesting an accommodation.

By following these tips, you can increase your chances of finding a job that is a good fit for your skills and abilities, while also accommodating your chronic illness.

Workplace accommodations

It’s important to consider how to keep yourself safe in the workplace as a person who is immunocompromised. If you qualify as having a disability, federal and state laws protect you from job discrimination and give you the right to negotiate with your employer for reasonable accommodations to perform your job. A reasonable accommodation is any modification or adjustment to a job, the work environment, or the way things are usually done that allows someone with a disability equal opportunity to get and successfully do the job.

Being immunocompromised may legally be a disability

Primary immunodeficiency or other immunocompromising conditions can qualify you as a person with a disability under the ADA and its successor, the Americans with Disabilities Act Amendments Act (ADAAA) [4].

The ADA defines someone as having a disability [5] if they have a physical or mental impairment that substantially limits one or more major life activities, have a record of such an impairment, or are regarded as having an impairment. The ADAAA explicitly mentions major bodily functions [6], including the immune system, as examples of “one or more major life activities.” So, if your diagnosis or condition substantially limits the function of your immune system, legally, it is considered a disability and you are entitled to ADA and ADAAA protections.

In addition, ADAAA clarified that medications or treatments that lessen the effects of an impairment should not be considered when deciding if the impairment “substantially limits” a major life activity. In other words, an immunocompromising condition may still qualify as a disability even if it is well-controlled with treatment. Impairments that are temporary, in remission, or come and go are also explicitly eligible under ADAAA.

Points to consider

ADA and ADAAA only apply to employers with more than 15 employees. However, some states have additional laws that apply to smaller employers [7].

Also, keep in mind that the ADA makes job discrimination against a qualified person with a disability illegal. To be qualified for a given job, you must be able to perform the essential functions of the job with or without reasonable accommodations. For example, an essential function of a hospital floor nurse is interacting with patients in person. If you are immunocompromised to the point that you cannot work with patients in person, your impairment makes it impossible for you to perform an essential function of the job, and you are not considered qualified to hold that position under the ADA.

Finally, any accommodation you request must be reasonable and cannot cause your employer undue hardship. What is reasonable versus what causes undue hardship depends both on what you are requesting and the size and resources of your employer. An example may be requesting to change the layout of a building that already meets the minimum ADA accessibility requirements—unless the building has movable walls, this would likely cause any employer undue financial and logistical hardship.

Example accommodations for the immunocompromised

Provided they don’t interfere with your essential job functions, here are some examples of accommodations that might be reasonable for someone who is immunocompromised.

To avoid exposure to infectious diseases:

• Full- or part-time work from home; the COVID-19 pandemic provided a lot of evidence that many office workers can work from home and accomplish the essential functions of their jobs.
• Air filtration, purifier, or cleaning unit in your workspace.
• Workspace that is physically removed from others; for example, you might request an office rather than a cubicle, or request to move your cubicle away from others.
• Ability to attend large meetings virtually; meetings could be attended from home or from your more isolated workspace.
• Support for wearing a mask, disposable gloves, and/or a face shield in the workplace.
• Limited or no travel.

To allow for medical treatments, side effects, or frequent illness:

• Modified work schedule; for example, shifting work hours on the days of infusion treatments.
• Limited or no travel.
• Work from home when needed.
• Modified leave policy. Note that, separate from the ADA, if your employer is covered by FMLA and you qualify for FMLA, you can take up to 12 weeks of unpaid leave within a 12-month period. This time does not have to be taken all at once; you can take it intermittently to cover recurring treatments, for example.

The list above is certainly not exhaustive. Check out the Job Accommodation Network’s (JAN) SOAR tool [8] for additional accommodation ideas.

How to request an accommodation

In general, employers should have a defined process for requesting accommodations. Check with your human resources department for details on that process. In addition, JAN has a form letter you can use to craft your request.

To request an accommodation, you will need to disclose your diagnosis or condition to your employer. A letter from your healthcare provider, as well as the chapter on your specific diagnosis from the Immune Deficiency Foundation Patient & Family Handbook can help you explain your condition and how it affects or may affect your job. However, note that your medical information is confidential, and disclosing it to human resources does not mean they can share it with others, internally or externally [9]. Your supervisor and coworkers are only entitled to know information required to implement any accommodation, not information about your diagnosis or condition itself.

It’s best to approach requesting an accommodation as a negotiation rather than issuing demands. Your employer does not have to agree to any particular accommodation as long as they put forth reasonable alternatives. The U.S. Equal Employment Opportunity Commission (EEOC) [10], which is responsible for enforcing ADA and ADAAA, calls this the “interactive process” and requires employers and employees to work in good faith under their enforcement guidelines for Title I of the ADA [11]. Be prepared to discuss alternatives to the accommodations you have requested and whether those alternatives work for you.

Sometimes, no matter how you approach requesting an accommodation, the process breaks down. In that case, JAN offers helpful advice on appealing your employer’s decision [12], including engaging local or state Fair Employment Practices Agencies (FEPAs) and ultimately, the EEOC if necessary.