Taking CSID to Work
The work experience can pose many unique challenges for individuals living with Congenital Sucrase-Isomaltase Deficiency (CSID). From dealing with bathroom issues and special food needs to missing work due to illness, you need to prepare yourself for a positive employment situation. It may seem difficult or embarrassing to discuss CSID with your supervisor or co-workers, but it is generally a good idea to do so. The type and amount of information you share is up to you.
With your supervisor, you should discuss any accommodations you feel are necessary to ensure you perform your job to the best of your ability while dealing with CSID. You may need to provide medication documentation from your physician. It is also important to let your supervisor know that while you don’t always have control over CSID symptoms, you are a dedicated, hard worker and do have control over your work performance. Explain to your supervisor that your symptoms may force you to leave a meeting unexpectedly or go to the restroom often, but this will not affect your job performance.
You may also consider telling your co-workers about your CSID condition. Just as having a good support system at home is important, having understanding co-workers can prove to be invaluable. You might find that co-workers include more safe-food choices in meetings or office gatherings if you alert them to your needs. If you have to spend a significant amount of time in the restroom, your co-workers will understand and not consider you lazy or accuse you of not pulling your weight on the team. You may choose to confide in trustworthy co-workers who can help to cover your responsibilities, should you need to use the restroom for an extended period of time.
You may even want to ensure your needs are being met at work by advocating for your rights as a disabled individual. Some individuals with CSID resist the “disabled” label and prefer not to initiate this process. This is a personal decision that can only be made by you. The following information regarding disability status is included for those who want additional guidance.
The Americans with Disabilities Act (ADA) is federal legislation that prohibits discrimination against disabled individuals. The ADA is applicable to all companies that have 15 or more employees. According to the ADA, a disability is defined as:1
- A physical or mental impairment that substantially limits one or more major life activities of such individual
- A record of such an impairment, or
- Being regarded as having such an impairment
An amendment to the ADA went into effect in 2009 that expanded the definition of a disability, providing better protection for individuals with chronic disorders such as CSID. Two specific changes that are most applicable to individuals with CSID are:2
- The term “major life activities” now includes recognition of problems with major bodily functions such as those of the digestive system.
- The episodic nature of some disabilities is now recognized, as long as the symptoms interfere with a major life activity when present.
Under the ADA, employers are required to provide reasonable accommodations for persons with a disability.2 Some examples of reasonable accommodations for an individual with CSID could include:
- Unlimited restroom access, including frequent breaks, as needed
- Moving the employee’s workstation or office closer to a bathroom
- Offering shorter, different, or flexible work hours
- Telecommuting when symptoms are severe
- Allowing time off for medical appointments or treatment
- Limiting long meetings, presentations, and travel
- Access to a refrigerator to store special foods or medications
- Allocating some duties to another employee, such as travel, if needed
Your employer is entitled to ask for documentation regarding your CSID and the limitations the diagnosis places on you as an employee. Your employer is prohibited from disclosing such accommodations to your co-workers since the ADA ensures employee privacy regarding medical concerns.
If your CSID symptoms are so severe they prevent you from working, Social Security Disability Insurance might be an option for you. According to the Social Security Administration (SSA), you may apply for disability if you are over the age of 18 years and live in the United States or one of its territories or commonwealths. The SSA has certain requirements that must be met, including how many years you have worked in the United States and how much you have paid in Social Security taxes in order to qualify for disability benefits. Your Social Security record will state if you have met the work requirement. The SSA considers CSID a disabling condition if it meets at least one of the following conditions:3
- You cannot do work that you did before,
- The Social Security Administration decides that you cannot adjust to other work because of your medical condition(s), and
- Your disability has lasted or is expected to last for at least one year or to result in death
To apply for SSA disability benefits, you may apply online, in person at a local Social Security Administration office, or by phone.
The question arises as to whether an individual with CSID should tell a prospective employer about this condition. You are not required by law to inform any prospective employers about your health condition. Employers are prohibited from asking questions or requiring medical examinations before making a job offer. Once a job offer has been extended, employers have a right to ask questions about your health history and are entitled to require medical examinations before you begin work. Employers are prohibited from withdrawing a job offer just because they learn that you have CSID. Job offers can only be withdrawn if the employer can prove that your CSID interferes with your ability to perform the essential functions of the job (with or without reasonable accommodations).2 Any information regarding your health status that is revealed during the job application process must be kept confidential; exceptions include:4
- Individuals involved in hiring decisions
- Supervisors and managers, if reasonable accommodations are necessary
- Health insurance carriers and government agencies
- ADA National Network. Glossary of ADA terms. Accessed September 29, 2018. https://adata.org/glossary-terms#D
- Social Security Administration. Disability benefits: how you qualify. Accessed June 4, 2023. www.ssa.gov/benefits/disability/qualify.html
- Social Security Administration. Benefits planner: disability, how you qualify. Accessed September 29, 2018. www.ssa.gov/planners/disability/qualify.html
- U.S. Equal Employment Opportunity Commission. Policy guidance on executive order 13164: establishing procedures to facilitate the provision of reasonable accommodation. Last updated October 20, 2000. www.eeoc.gov/policy/docs/accommodation_procedures.html