Finding Balance: Managing Work and Life with PCD
We know that living with a long-term condition like PCD can sometimes feel like walking on a tightrope.
One minute you’re managing okay, the next minute, your symptoms get worse, and your carefully constructed balance is thrown off-kilter. Add work into the mix and that tightrope can feel miles above the ground. It is possible to manage your health and maintain a fulfilling career. It takes strategy, self-compassion, and a willingness to advocate for your needs.
Here are some tips we gathered from our community to help you manage PCD and work.
Know your limits
Knowing your limits is incredibly important. Chronic illness often come with fluctuating energy levels, and varying symptoms from one day to the next. Learn to recognise your limits and pace yourself. From prioritising your tasks to scheduling regular breaks, whether you work from home, an office or outdoors, we don’t recommend pushing through until you crash. For some, regular short breaks throughout the day can be more effective than one long break. Others might find a longer break gives you time to adequately recharge and perhaps fit in some physiotherapy. Everyone is different, and you must find a system (or many different systems!) that work for you.
Prioritise self-care
If your daily morning routine is centred around medications such as nebulisers, physiotherapy, and inhalers, then we suggest you give yourself not only time to do these but also allow time to rest before you start your working day, especially if you find yourself tired afterwards. Don’t feel guilty about taking time off for your health, whether that’s needing time off due to sickness or because you have a medical appointment. Put yourself first and ensure that you feel supported if you need to voice with your employer that you need time.
Occupational Health
Does your organisation or employer have access to Occupational Health? Occupational Health services can be a valuable resource for employees managing long-term illnesses. They can provide expert advice on workplace adjustments, help you communicate your needs to your employer, and assess your work environment to guidance on managing your condition at work, including strategies for pacing, stress management, and return-to-work plans after illness-related absences. Ultimately, their goal is to support you in maintaining your health and well-being while enabling you to continue working productively.
One of our community members said: “Occupational Heath were fantastic with my line manager, helping me to express my needs and concerns clearly. We put in longer lunch breaks so that I can do some physio in the middle of the day, helping me to better manage my PCD during work hours.”
Communication is key
We highly recommend that you discuss your needs and limitations with your line manager. You should feel supported and able to voice your concerns if you need extra support or time. There may be room to explore flexible work arrangements, reduced hours, or modified duties. You may know your limits, but you must make sure that you communicate these effectively and set realistic expectations. It’s okay if you aren’t working at 100% all the time, nobody does!
Focus on what you can do, prioritise your workload, and work with your employer to ensure you don’t overwork yourself.
Advocate for yourself
The biggest thing you can for yourself and managing your PCD is advocating for yourself. Know your rights as an employee with a long-term illness and be prepared to discuss your needs and negotiate accommodations that will help you succeed at work.
Check if you are eligible for DLA/PIP
Many patients with PCD are eligible for DLA/PIP. Many of our community members receive these payments. This can help to alleviate the financial strain of living with a long-term illness. Need help applying? Get in touch with us at [email protected] and we can help you with your application.
Are reduced hours feasible? If financially viable, it might be worth considering reducing your hours if you are struggling to work full-time. This is a personal choice, and we would recommend you speak to your family, friends, line manager, as well as your PCD teams about this.
Remember, you are not alone.
Many people successfully manage their health and careers despite living with a long-term illness like PCD. The PCD community is a perfect example of not letting illness dictate your limits. We know PCD patients making successful careers as scientists, nurses, marketing specialists, teachers, fashion stylists, and photographers to name a few!
The PCD community is out in force showing that it is possible to have PCD and build a rewarding and fulfilling career.
Be patient with yourself, celebrate the wins, and don’t be afraid to ask for help along the way.