MY EXPERIENCE OF WORKING WITH HEMOPHILIA
Discussing hemophilia with your employer
Technically, there’s no pressure or obligation to discuss your hemophilia with an employer. In many countries you don’t have to talk about your condition if it does not impact your work. However, in job interviews I’ve often voluntarily spoken about my hemophilia because it comes up – it’s on my CV that I’m involved in hemophilia volunteering work. People usually have a genuine interest in the topic and want to be supportive. I’m always telling people that if you talk about hemophilia in a confident manner, you leave a good impression on people and that helps to make a difference.
Many people don’t know much about hemophilia because it’s such a rare disease, so I try to educate people about it so that they understand that it won’t affect my ability to work. I also think that if you are open about medical conditions, employers are more likely to offer you flexibility with your working hours so that you can accommodate healthcare appointments, etc.
However, we all know that having these conversations isn’t always easy – if you do need help, there are lots of resources available. Firstly, I’d recommend speaking to a representative of your local advocacy organization or a healthcare professional that you trust. Both are well-positioned to advise you and can offer tips on how to plan your career around your hemophilia. Additionally, the World Federation of Hemophilia website has several resources which you can use to help explain to your condition to your employer, e.g. an overview of what hemophilia is and a page giving an introduction to bleeding disorders.
Impact on day-to-day work
People who don’t have hemophilia may think it has a greater impact on employees than it really does. For example, on business trips a large part of my suitcase will be filled with medicine. I also wake up earlier every second day to take that medicine. This might seem like a massive burden for someone without hemophilia, but it’s normal for me and is engrained in my routine so doesn’t impact my day-to-day work. As long as you take the right medicine at the right time, your work doesn’t need to be affected.
The impact that hemophilia has on your work does depend on which career path you take. If you’re in a career that requires a lot of physical labor or you live in a country where access to treatment is more restrictive, hemophilia might impact your working life more than it has impacted mine. Again, however, I would recommend contacting your local advocacy organization or a healthcare professional, as they will be able to give you advice on how to navigate your chosen career path whilst living with hemophilia.