Working when you have Genetic Sucrase-Isomaltase Deficiency (GSID) can pose many challenges. From dealing with bathroom issues and special food needs to missing work due to illness, workers with GSID need to prepare themselves for a positive employment situation. It may seem difficult or embarrassing to discuss GSID 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 that you feel are necessary to ensure you perform your job to the best of your ability while dealing with GSID. You may need to provide medication documentation from your physician. It is also important to let your supervisor know that while you do not always have control over GSID 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 ability to do your job.
You may also consider telling your co-workers about your GSID 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.
Some adults with GSID may want to ensure their needs are being met at work by advocating for their rights as a disabled individual. Other adult patients with GSID resist the label “disabled” and prefer not to initiate this process. This is a personal decision that can only be made by the person with GSID. The following information regarding disability status is included for those patients who may want to consider pursuing this course of action.
The Americans with Disabilities Act (ADA) is federal legislation that prohibits discrimination against disabled individuals. The ADA is applicable to all employers who have 15 or more employees. According to the ADA, a disability is defined as:
- “(A) a physical or mental impairment that substantially limits one or more major life activities of such individual;
- (B) a record of such an impairment; or
- (C) being regarded as having such an impairment”
A 2009 amendment to the ADA expanded the definition of a disability, providing better protection for individuals with chronic disorders, such as GSID. Two specific changes that are most applicable to persons with GSID are:
- 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. Some examples of reasonable accommodations for a patient with GSID could include:
- Unlimited restroom access including frequent breaks as needed
- Moving the employee’s workstation or office closer to the 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 like travel to another employee if needed
Your employer is entitled to ask for documentation regarding your GSID and the limitations the diagnosis places on you as an employee. Your employer is prohibited from disclosing such accommodations to your co-workers as the ADA ensures employee privacy regarding medical concerns.
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