Managing Work When You’re Managing a Disease

Having pemphigus or pemphigoid can be a full-time job. Whether you’re working full-time, part-time, or from home, pemphigus or pemphigoid can make staying productive difficult. And doctor appointments, infusions and medication schedules can be hard to adhere to when you have a job. Navigating a chronic illness like pemphigus and pemphigoid  while maintaining a productive work life can be challenging, but it is achievable with the right strategies. 

Ideas for support:

• Open a dialog with your management or HR about possible accommodations
• Consider using short-term disability or Family and Medical Leave (FMLA)
• Use reminders and planning tools to manage brain fog
• Schedule demanding tasks during your “best” time of day
• Your value isn’t measured by how much you do. It’s in who you are.

Be sure to check with your state to see if they have programs that can help get you support quickly, like FMLA and ADA. Use these links to learn more about ADA rights and accommodations. Some additional resources are listed below:

• ADA.gov – Employment rights:  https://www.ada.gov/employment/
  • This is the official government site explaining how the ADA protects people with disabilities in the workplace. It includes what employers must do and what your rights are.
• Job Accommodation Network (JAN) – Skin Disorders Accommodation Guide: https://askjan.org/disabilities/Skin-Disorders.cfm
  • Offers specific examples of accommodations for individuals with skin conditions, including photosensitivity, wounds, and pain. 
• JAN: How to Request Workplace Accommodations: https://askjan.org/publications/individuals/employee-guide.cfm
  • This guide helps people navigate the process of disclosing a condition and requesting accommodations. Includes template letters.
• U.S. Equal Employment Opportunity Commission (EEOC) – Disability Discrimination: https://www.eeoc.gov/disability-discrimination
  • Details what counts as discrimination and how to file a complaint if rights are violated.
• U.S. Family and Medical Leave (FMLA) –https://www.dol.gov/general/topic/benefits-leave/fmla
  • A U.S. law that requires covered employers to provide eligible employees with job-protected, unpaid leave for specific family and medical reasons

Next Time: “When You’re the Caregiver and a Patient”