Pulmonary conditions are one of the most common chronic diseases among Americans, and they can affect your energy levels and time. Each family will need to find the right approach for their own situation, but it’s important to know there are options besides all-or-nothing when it comes to work.
Flextime scheduling means different things at different companies. It may mean a consistent schedule (i.e., you could choose to work 7 a.m. to 3:30 p.m. vs. 9 a.m. to 5:30 p.m.), or it may mean specific hours day-to-day as long as you put in the required total work hours.
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. This schedule gives you more time to recover and reenergize before Monday rolls around.
Remote work has been an especially popular option since the COVID pandemic, giving individuals the chance to work from home and eliminate the stress of a daily commute. If you have to go into the office, you may be able to negotiate working some days from home. Many employers use a shared file storage system in the cloud and can arrange for you to participate in meetings via phone or video conferencing.
Insurance and disability information
Our Insurance and Financial Assistance section covers work-related issues such as Social Security Disability benefits. SSDI pays benefits to eligible people who can’t work because their medical condition is expected to last at least a year or result in death.
Insurance and financial assistanceTicket to Work Program
Social Security’s Ticket to Work Program supports career development for Social Security Disability beneficiaries age 18 through 64 who want to work. The ticket program is free and voluntary. The program helps people with disabilities progress toward financial independence. If you receive Social Security benefits because of a disability, you may already qualify for the program.
Ticket to WorkKnow your rights
Even on days when you are feeling your best, PH can take a toll. If you continue to work, know your rights and monitor legislative protections for the workplace.
Americans with Disabilities Act
The Americans with Disabilities Act prevents employers from asking job applicants about the existence, nature or severity of a disability. That includes questions about your family’s health, past illnesses or surgical procedures you have undergone.
Employers can ask whether you can perform the essential functions of a job but they must make reasonable accommodations to allow you to perform your job as necessary, such as providing a refrigerator or freezer for your medications. For more information, call 800-514-0301 or visit www.ADA.gov.
Complaints against employers who may have violated provisions of this Act (i.e. discrimination against disabled job seekers) may be filed with the Equal Employment Opportunity Commission.
Family and Medical Leave Act
The Family and Medical Leave Act 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 the 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 at 800-959-FMLA or visit the FMLA website.
Advice from working PH patients
Here are some tips and information on more helpful work-related legislation from working PH patients:
- If you don’t treat your disability like a big deal, others may not either.
- If you sign up for health insurance the first time it is offered, you may not have to take a physical.
- If you run into discrimination because of your PH and you are a union member, your union may be able to help you.
Work-life balance is important for caregivers, too
If you or your loved one has been diagnosed with pulmonary hypertension, maintaining the typical 9-to-5 work routine can be tough. According to a 2023 AARP survey, about 67% of 48 million family caregivers in the U.S. have difficulty balancing their jobs with caregiving duties, and 27 percent have shifted to part-time work.
