Last week, I wrote about working from home. Not all occupations adapt to telecommuting. Some employers can’t, or won’t, allow employees to work from home. How can inflammatory bowel disease (IBD) patients balance work and managing their disease with a mainstream job?
Working with IBD can be emotionally and physically exhausting, especially during a flare. I spent most of my career prioritizing it over my health because I thought I had no choice. I didn’t know I had options under the Americans with Disabilities Act (ADA), which celebrated its 30th anniversary on July 26.
The vicious cycle
I worked at my sickest for two reasons: health insurance and income. Before the Affordable Care Act, I only qualified for health insurance through my employer or spouse. Because I was single at the time, finding a job was a lot simpler than finding a husband.
Likewise, being unmarried, I had to support myself financially. I constantly feared losing my job because of my illnesses. I needed to work to pay for my health, but my health made working difficult.
In 1997, my gastroenterologist diagnosed me with primary sclerosing cholangitis (PSC), an autoimmune liver disease associated with IBD. I was afraid to tell potential employers about my disease for fear of not being hired. Also, I didn’t understand PSC enough to know how it would affect my ability to work.
I didn’t realize how detrimental having an autoimmune disease could be for my career until I was laid off. While I looked for a job, a good friend hired me as an independent contractor for the company where he was the chief operating officer. I half-jokingly suggested he hire me full time. Guffawing, he bluntly replied that he would never hire me because I would increase insurance premiums. From then on, I mentally noted never to discuss my disease with employers or colleagues.
My secret came out when I was hospitalized and diagnosed with Crohn’s. I cautiously told my supervisor I needed to take three hours off every six weeks for Remicade (infliximab) infusions. Apologetic, I offered to use sick time. After my supervisor spoke with human resources, I was able to work from the infusion clinic without using paid time off. I was grateful that my employer was sympathetic. I didn’t know they were legally obligated to approve my request under the ADA.
Invisible disabilities and the ADA
In 2016, I took a mandatory Equal Employment Opportunity course for work. The disabilities module defined “invisible disability,” a term I always associated with neurological, auditory, and visual impairments. I was shocked to discover the ADA recognizes several medical conditions, including IBD and PSC, as invisible disabilities. It also protects immunosuppression caused by medications like Remicade.
The ADA defines a disability as “a physical or mental impairment that substantially limits one or more major life activities.” The ADA doesn’t explicitly list specific diseases. However, physical impairment infers physiological disorders or conditions that affect one or more body systems, such as digestive, immune, skin, cardiovascular, musculoskeletal, endocrine, circulatory, etc.
Under Title I of the ADA, an employer can’t fire or discipline an employee because of a disability. The employee also has the right to request “reasonable accommodation” to perform their job. I had spent my entire career up to that point unaware that the ADA protected my job. Had I known, my career path may have looked a lot different.
Requesting reasonable accommodation for IBD
Requesting reasonable accommodation may vary by employer. I didn’t know it at the time, but working remotely during my Remicade infusions was an accommodation. The entire process was verbal and quick. After my liver transplant, I had to coordinate with the office of diversity and inclusion and human resources to complete the accommodation forms. The more formal and systematic process took almost three months.
The U.S. Justice Department’s Civil Rights Division recommends first approaching your supervisor with your request. Involving human resources is prudent because the department would be more familiar with ADA law.
An employer might require the employee to provide documentation explaining their disability to support the request. This might include submitting a copy of medical records or a letter from the doctor. The Crohn’s & Colitis Foundation has a sample letter of accommodation on its website.
Knowing my rights and protecting my career
Now that I understand my rights as an employee with an invisible disability, I’m more comfortable self-disclosing as disabled on applications. This allows me to negotiate work terms to meet my medical needs. I’m still wary an employer won’t hire me if they think my health needs will become a financial liability. However, if a company cares more about profit than people, I wouldn’t want to work there anyway.
Note: IBD News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of IBD News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to IBD.
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