Shellye Horowitz shares her story of working through the ups and downs of hemophilia, from carrying factor to school every day to creating safety plans and finding supportive colleagues. She reflects on dreaming big, adapting with confidence, and the belief that hemophilia doesn’t have to limit a fulfilling career. Read her column here.
Transcript
Hi, my name is Shellye Horowitz, and I live in rural Northern California.
So balancing health needs with job responsibilities when working with hemophilia can ebb and flow in many ways, depending on what is going on.
So I could go a year with no issues and work pretty regularly and not have any problems. And there have been different times in certain roles where it has been more challenging.
For example, as a middle school principal, I was chasing kids on playgrounds all the time, and sometimes, unfortunately, having to step right in the middle of fights to break them up. Not the best move as someone with hemophilia, but you know, sometimes it happens.
So I’ve definitely had hip bleeds or other issues that then kept me limping for days and days.
Honestly, I think I’ve grown more now than in the past, and I used to kind of suffer through things more than I do now, and I think today my advice would be take the time to heal. Do what you need to do.
I was definitely the person who put on a brave face, brought my factor products to work, infused every day, and just kept going. And honestly, sometimes that meant that the healing took a lot longer. So it’s not a balance that I would necessarily recommend.
And then the other thing I would say, when you’re looking at work-life balances, I think it’s important, when you can, when you feel safe and comfortable, to give yourself an opportunity to talk, at least with some of your colleagues, to let them know that hemophilia is an issue and how it may or may not impact you.
And I always liked having a safety plan. “Hey, if I’m unconscious, you should probably know there’s a refrigerator in my office with a lot of medication you should grab.” And I wanted them to to have that knowledge, so to help keep me safe.
I would say to an employer or manager who has an employee with hemophilia, first of all, thank you for investing in us. We are just like everyone else. We can offer phenomenal value to your workplace. We come with all the same qualifications as anyone else can, and we tend to be really loyal employees who are very thankful to, to be able to work and to be able to contribute.
And 90, 95, even 99% of the time, you are never going to know that we have a bleeding disorder. We’re going to come and do the same sort of work as everyone else, because the treatments are so amazing at this point.
I do think that if you know that you have an employee with hemophilia, it is an opportunity to open up some safety conversations.
“Are there any things that could happen at work where you don’t feel safe, or you want some extra precautions to make sure that we prevent bleeds so that we can keep you working all the time and not have to worry about you missing work?”
And then, of course, if needed, there are legal protections, like 504 plans, that can be written at work to make sure that everyone is on the same page in terms of how to protect safety.
I think the best advice I could give to someone with hemophilia about managing work and health is to not limit yourself. We do have the ability to work most of the time.
I do want to acknowledge there are individuals who have significant mobility or pain issues that may make it harder to work. Even then, it may be possible to be able to get training so that you can have a work-from-home remote position where you have an opportunity to continue to contribute and feel good about yourself, that you’re working and earning a living when you can.
And I think that many people are surprised sometimes by how much they really can do. And you have the right to dream. You should dream. Think about what you enjoy doing and see if you can correlate what you love with what you can get paid to do, and go for it.
Don’t let hemophilia stop you. It really doesn’t have to be a barrier to a successful career for most of us.
