Balancing work, life, and hemophilia

Work-life balance has become an important topic when discussing career and health. Companies advertise work-life balance in job descriptions. Work-life balance has been the subject of countless videos and articles. Entire books have been written on the topic.

What is work-like balance, exactly? The basic idea is that, for many people, work takes up a lot of time and energy. In some cases, the time and energy spent on work interferes with the other important areas of a person’s life—relationships, exercise, eating well, and doing things that you find meaningful. This topic has become even more relevant as email and smartphones have blurred the lines between work hours and non-work hours.

Maintaining a work-life balance is important to maintaining physical and mental health—and its importance is compounded when you are living with a chronic condition like hemophilia.

About hemophilia

When a person has hemophilia, their body does not make enough clotting factor. Clotting factors are proteins in the blood that prevent bleeding and stop bleeding when it occurs—for example, when you sustain an injury. There are different types of hemophilia, the most common being hemophilia type A. The majority of people who have hemophilia are male and the majority have it from birth—though hemophilia does occur in females, and there is something called acquired hemophilia, which occurs later in life.

While people with hemophilia can enjoy a high quality of life and successful careers, hemophilia can feel like having a second job. Some of the challenges of managing hemophilia include:

• Ongoing treatment. There is no cure for hemophilia and people will need regular healthcare appointments for treatment—for example, infusions of lab-made clotting factor that replace the clotting factor the body cannot make.
• Specialized healthcare. Working with a comprehensive care team is the preferred approach to treating hemophilia. While this is highly effective, it can get frustrating when even something that seems like it should be relatively simple—like going to the dentist—requires at least some degree of specialized care and extra work.
• Lifelong condition. Avoiding bleeds and injuries is another important part of treatment. This means that hemophilia must be considered when making decisions on how to spend your time—for example, participating in a contact sport.

Work, life, and hemophilia

It’s normal for managing hemophilia to feel exhausting from time to time, especially when it needs to exist alongside work and the other parts of your life. Here are some strategies and things to keep in mind to help you strike the right balance.

• Make sure you are in the right role. People with hemophilia are advised to choose jobs and work environments where the risk of injury is minimal—for example, you’re less likely to sustain an injury working in an office versus a construction site. The health insurance plans the company provides is another important consideration. You will also need to decide if, how, and when you need to disclose your diagnosis to your employers.
• Prioritize healthcare. It’s important to stay on top of treatment, even when you’re working extra hours or you have a packed schedule. Keep in mind that the best way to keep hemophilia from interfering with work and the rest of your life is to stay on top of treatment.
• Prioritize the other areas of your health. Make time to stay active and eat well. Consider a mindfulness activity like meditation and yoga, which can lower stress and also possibly help job performance.
• Avoid burnout. Everyone needs a break sometimes. It’s important to recognize when you have too much going on at once and need to take a step back. Schedule time for things that are not work or hemophilia management.
• Ask for help. Asking for help can take several different forms. It may be being honest with an employer when a workload or deadline is too much. It may be asking friends or family for help when you need someone to talk to. It may be giving yourself the time and space to take a step back.
• Stay organized. Staying organized in your work life, personal life, and healthcare can help you feel more in control and less stressed.

It’s important to remember that hemophilia is a different experience for everyone. When in doubt, talk to your healthcare providers, who will be your best source of information about your diagnosis, your treatment, and your health.