Employment and Careers

Many people living with PAH fear their career options will be limited due to their condition. Worrying about the physical demands of a job and the fatigue that working may cause are common concerns.

For people living with PAH there are a number of things to consider such as choosing a career, navigating the workforce and achieving job satisfaction day-to-day, all while managing life with a chronic health condition. This can make finding or maintaining a career challenging.

However, with the right support, many people living with PAH are able to have fulfilling careers and job satisfaction.

Speak to your healthcare team

• Your healthcare team can advise and help you to pick the career path best suited to you. Talk to them about the types of work or activity levels that might be best suited to your current and future health needs
• Consider sharing your goals and ambitions with your healthcare team, as it helps them to advise you on your career/employment goals and develop an optimal care plan

Talk to your local patient organisation

• Your patient organisation can put you in touch with other people living with PAH who will be able to share their own experiences with you
• Find out if you can support your local patient organisation through volunteering or more formal work experience placements – this could help you with job applications as an addition to your CV

Set goals

Applying for a job can take some time. While looking for a job, set small goals to help keep a sense of progression and fulfilment throughout the application process

Choose something you will enjoy

• There are a wide range of careers available for people living with PAH. Try to find a job that matches your interests and hobbies – this will likely make the work enjoyable
• Many people living with PAH work in the healthcare field as they can utilise their unique experience to provide valuable insights. Consider how you can use your areas of knowledge and personal experiences in a career

Consider flexible working

• When looking for a job you may want to consider the options of part- or full-time employment and jobs that offer home-working or flexible working hours as this can help reduce strain on your body
• Use online job search engines to filter results according to your needs, like part- or full-time employment, home-working and flexible working hours
• Consider developing skills for prospective jobs that offer more scope for home-working or flexible hours

Think about the location

Consider the location and accessibility of any place of work. Things like length of commute and distances from your workspace to amenities are worth thinking about

Volunteering is a great alternative

Consider volunteering or taking an online course. This can help to provide a sense of fulfilment and purpose if you would like to work but do not feel well enough for permanent employment

Talk to your employer

Some jobs, especially those that are physically demanding e.g. a career involving heavy lifting or long hours, may be challenging if living with PAH. If this is the case for you, talk to your employer to see how your job role could be adapted to fit your needs, for example regular rest breaks could be agreed or potentially moving to a different role within the organisation that better suits you

Think about your working environment

Think about your current working environment and how this may affect your health. For example, if you work in an environment that has poor air quality you may want to ask for equipment/technology to enable you to be more comfortable when carrying out your job

Keep active

It is recommended to take gentle exercise, e.g. light walking during the working day, especially when working in a sedentary job.¹ It is important that people living with PAH get up periodically and walk around and/or undertake gentle exercise

Consider sharing your diagnosis

In many countries, it is entirely your choice to share your diagnosis. While some people feel strongly about keeping their condition private, others have greatly benefited from sharing their experience of PAH with their employer/co-workers. Explaining PAH to an employer or your co-workers can be challenging, as they most likely haven’t heard of the disease before. Think about sharing your diagnosis with your employer or colleagues that you are close to in case you become unwell at work