Working Around PH: Find the Right Work-Life Balance to Remain an Active Member of the Workforce

If you or your loved one has been diagnosed with pulmonary hypertension, maintaining the typical 9-to-5 work routine can be tough.

Caregivers: Know that you’re not alone – according to a 2009 Metlife survey, 7 out of 10 caregivers work full or part-time. These caregivers make up 15 percent of the U.S. workforce, and this number is expected to grow in coming years as people live longer and retire later.

PH patients: According to the Partnership to Fight Chronic Diseases, at least half of Americans are living with a chronic disease, forcing them to make decisions about whether they can continue to work. In fact, pulmonary conditions are one of the most common chronic diseases among Americans.

Each family will need to find the right approach for their own situation, but it’s important to know that there are options besides all-or-nothing when it comes to work.

  • Flextime Scheduling. Flextime scheduling means different things at different companies. It may mean that you are allowed to choose your own schedule but need to be consistent (i.e., you could choose to work 7 a.m.-3:30 p.m. vs. 9 a.m.-5:30 p.m.), or it may mean that you can choose your specific hours day-to-day as long as you put in the required total work hours.
  • The Four-Day Work Week. The four-day work week typically involves longer business hours, balanced by a three-day weekend. In some cases, employers keep normal business hours but are only open four days a week. Research has shown that the four-day work week is beneficial for employees and employers alike, giving employees more time to recover and reenergize before Monday rolls around and encouraging employees to use their time more productively.
  • Work From Home. While you may not be able to or want to negotiate a shorter work week, you may be able to negotiate to complete a certain percentage of your hours telecommuting from home. Many employers can arrange for you to access your files from a home computer and to participate in meetings via phone, Skype or a webinar system.
  • Respite Care from Insurance, State and Other Sources. Long-term care insurance policies, Social Security, veterans’ benefit plans, local and state agencies all may have programs to help cover the costs of someone coming to your home or for you or your loved one to go out to a respite care program for patients or caregivers. In some cases, these programs may even pay caregivers a small “salary” for their caregiver role. Do your research; these programs may have very specific guidelines for how you use the “respite time” they cover.
  • Know Your Rights. Various state and federal laws protect the workplace rights of people living with serious medical conditions and their caregivers. The Family and Medical Leave Act (FMLA) and Americans with Disabilities Act (ADA) are two of the most important laws for you to know about as a working PH patient or caregiver.
    • The Family and Medical Leave Act (FMLA). FMLA allows eligible employees to take up to 12 weeks of unpaid, job- and health benefits-protected leave each year for serious health conditions, whether their own or an immediate family member’s. If this leave is for medically necessary care, FMLA allows caregivers and patients to take those 12 weeks intermittently (i.e., one day a week). For more information, call the Department of Labor’s FMLA information number at 1-800-959-FMLA or visit
    • Americans with Disabilities Act (ADA). ADA not only covers people with disabilities – it protects their caregivers from workplace discrimination, too. Workplace discrimination is, essentially, differential treatment of one group of employees over another. If your place of employment allows mothers to take time off to care for their sick kids, then legally they can’t deny you the same right to take time off to care for your sick spouse or parent. ADA also entitles individuals to reasonable accommodations. If you need to leave the office on your lunch breaks to mix medication or take your loved one to a doctor’s appointment, a policy that bars employees from leaving the office at lunchtime could be in violation of “reasonable accommodations” under ADA. For more information, call 800-514-0301 or visit

Whatever work-life balance you and your loved one choose, know that hundreds of other PH patients and caregivers are facing similar choices at the same time. If you’re looking for others to share ideas with, try our telephone, in-person or online support groups. Get connected

This article first appeared in Pathlight Fall 2013