Should I tell my work I have hemophilia? I am worried the company might hold my hemophilia against me. I do not want the people at my work to think I can’t do my job or that I will be using too many sick days.
Your concerns are valid and shared by many people with chronic diseases. According to experts in this area though, honesty is the best policy. There have been cases in which a person with a chronic disease used many sick days without their boss knowing why and the boss concluded the person had a drug problem verses a chronic disease. Honesty goes a long way to help your workplace appreciate your condition and recognize that you do have rights related to your disability.
Protections for chronically ill workers in the US are there, but still a bit confusing. Two sets of laws are meant to provide some support to chronically ill workers: (1) the Family and Medical Leave Act which allows employees to take up to 12 unpaid weeks off work each year for medical or family emergencies; and (2) the Americans With Disabilities Act which prohibits discrimination and ensures equal opportunity for persons with disabilities in employment, among other protections.
Under the Americans with Disabilities Act, if an employee’s illness meets the definition1 of a disability, an employer is required to make reasonable accommodations to a worker’s job or work environment. You can ask for adjustments to your job or work environment to meet your needs. But recognize that an employer is not required to provide accommodations that are expensive or difficult to provide. The most common accommodations are: parking or transportation modifications, making existing facilities accessible, offering new equipment to workers, restructuring jobs and modifying the work environment.2 The Department of Labor’s Job Accommodation Network (800-526-7234) can help you figure out the type of accommodations to which you are entitled.
If you feel you need support and advice on workplace discrimination, there is help for people with bleeding disorders from Advocating for Chronic Conditions, Entitlements and Social Services (A.C.C.E.S.S.®). A.C.C.E.S.S.® is a program dedicated to helping find solutions to the social and economic problems that confront families facing chronic conditions. Advice from A.C.C.E.S.S.® is offered free of charge to persons with a bleeding disorder. Call the legal support hotline toll free at 1.877.851.9065 to speak with an attorney.
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 The Americans with Disabilities Act (ADA) has a three-part definition of disability. Under ADA, an individual with a disability is a person who: (1) has a physical or mental impairment that substantially limits one or more major life activities; OR (2) has a record of such an impairment; OR (3) is regarded as having such an impairment. A physical impairment is defined by ADA as “any physiological disorder or condition, cosmetic disfigurement, or anatomical loss affecting one or more of the following body systems: neurological, musculoskeletal, special sense organs, respiratory (including speech organs), cardiovascular, reproductive, digestive, genitourinary, hemic and lymphatic, skin, and endocrine.” Source: WI Department of Health Services.
2 According to the Society for Human Resource Managers, the top five accommodations for the disability act provided by employers in 2005 (the last year for which data are available).
*HFA frequently receives questions from the bleeding disorders community related to advocacy issues. The questions often impact the entire community. In an effort to reach the largest audience possible with our responses to these widely applicable questions, HFA developed “Dear Addy.” Questions submitted to this column are edited in order to protect privacy and should be considered educational only, not individual guidance.