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Working with PH

Working with PH may at first seem like a challenge, but it is possible! This guide provides tips to help balance working while taking care of your PH. 

Tips for Working with PH

  • Know your rights. All employers have policies, and knowing your rights can help get through tough times if you have to miss work because of your illness. Consider meeting with a disability advocate to help you understand your Social Security Disability Insurance at work.
  • Don’t do it alone. Each state has an organization to assist those with disabilities return to work or assist with maintaining employment. Find your organization and ask for help – they are trained to advocate on behalf of the disabled.
  • Give yourself a break. Whether it’s a summer break, a week’s vacation or a personal day, take that time. Working with PH is not always going to be easy, and you need to have some “you time” every once and a while.
  • Don’t hide your illness. The whole company or office doesn’t have to know, but at least your direct supervisor and a close colleague or two should know that you are diagnosed with PH. This will help if you have an emergency at work, have to take a sick/personal day or need support on the job. Having someone in the know on-site helps when you’re having a not so good day or have to miss work.
  • Do it your way. Sometimes how others do the job may not be the way that you can do the job, so do what works best for you. Employers may be able to assist you with the right equipment you need to complete your job efficiently. This is another reason you won’t want to hide your illness from everyone at work.
  • Prepare ahead of time. Some mornings you may wake up to a bad PH day. By preparing the night before – or having a Plan B or even Plan C or D set up – you can still work despite not feeling so well. Lay out your clothes the night before, utilize a planner to schedule the day in advance and give yourself enough time in the morning before you leave for work.
  • Don’t be so hard on yourself. You may feel like you want to push through everything and be like every other employee, or even go beyond what’s expected of every employee. However, your body won’t always allow you to do that, and it’s important to remember that is okay. If you find you simply cannot finish an assignment because you need to take care of yourself, tell your supervisor and just do that. Sometimes being different, more creative and simply honest have a way of benefitting others as much as yourself.

These tips came from Kiara Tatum’s Generation Hope blog post on her experience working with PH. Check out the whole post!


Give it a Listen …

Working with PH   9 to 5 with PH

Creative Expression for Wellbeing

Does a PH diagnosis mean it’s time to throw in the time clock? Working patients share their tactics for managing a job and their PH in this webinar recording.


When People Just Don't Understand PH panelists

Find a way to continue working while keeping up your health. Join this discussion of workplace rights and what you should or shouldn’t tell your employer and fellow employees.

Looking for more information? View additional PHA resources on working with PH


Insurance Resources

  • Check out this overview of different types of insurance to learn more about your current or potential plan.
  • For general information about insurance advocacy and education, view our Online Insurance Guide.

Social Security Disability Resources

  • One myth is that you can’t work at all while drawing disability benefits, but this is false! See this Work and Social Security page to learn about how SSA can actually help you get back to work.
  • What is Social Security Disability (SSD)? Who can qualify? What are the benefits? PHA's Social Security Disability page has answers to these questions and more!
  • While Applying for Disability may seem like an intimidating process, PHA has tips on how you can increase your chances of being approved on your initial application.

Patient's Perspective

In the Pathlight article, "PH, Professionalism and the Digital Age," PH patient and PHA Board Member, Colleen Brunetti, shares her personal story, tips and advice for keeping a professional image while incorporating your PH.

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The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.