How to discuss hemophilia with your employer

Written by Agata Boxe | Last updated March 2, 2026
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This is part of an advocacy series that honors Hemophilia Awareness Month. To read more in this series, published throughout the month of March, click here.

The idea of telling your employer that you have hemophilia can feel daunting, especially if you are unsure of how they will respond.

But because hemophilia symptoms — such as unexpected bleeding, fatigue, and joint pain — may affect your work, you may choose to reveal your diagnosis and ask for accommodations.

While you may have concerns about how disclosure might affect the way you are perceived and treated, learning about your rights in the workplace can make the process a little less intimidating.

Understanding the law

In the U.S., there are legal protections to support employees with disabilities and chronic conditions.

For instance, employers with 15 or more employees are covered by the Americans with Disabilities Act (ADA), which requires these employers to provide reasonable accommodations to workers with disabilities.

Most states also have their own state discrimination laws, though rules and compliance criteria may vary. Make sure to always check the specific laws of your state. For example, the New York State Human Rights Law applies to all employers in the state, regardless of the number of employees.

These laws typically state that you need to work in partnership with your employer to agree on the type of accommodations you need. That often requires you to disclose your illness or relevant symptoms so the employer better understands your limitations and needs.

Preparing for disclosure

Because you can’t know for sure how your employer will respond, you want to be thoroughly prepared for the conversation.

Start by writing down your hemophilia symptoms and how they can affect your work life. Be specific about any challenges you may have experienced on the job. Then come up with suggestions for accommodations that could help you do your job safely and confidently.

Examples of what you may request:

  • Remote work: Working from home can make a big difference in managing hemophilia symptoms and reducing the risk of injury.
  • Flexible hours: Having a flexible schedule makes it easier to attend medical appointments as needed.
  • Permission to take unscheduled breaks: They can help you manage fatigue and conserve energy.
  • Optimized workstation: An ergonomic chair and desk can help reduce joint strain.
  • Modified job duties: Examples include limiting prolonged standing, heavy lifting, and other physical tasks that may affect your symptoms.
  • Dedicated parking spot: Accessible parking can help reduce walking distance and preserve energy.
  • Private space: A clean private space for administering factor infusions can help manage medical needs.
  • Flexible leave policies: They can give you enough time to deal with and recover from flares or bleeding episodes.
  • Temperature control at work: It can help with joint pain that’s affected by cold.
  • Adjusted productivity expectations: They can be especially important during recovery periods after bleeding episodes or procedures.

Managing the conversation

When you’re ready to discuss your situation, schedule a meeting with your manager, someone from human resources, or both.

If possible, rehearse the conversation with a friend or family member ahead of time.

During your conversation with your employer, focus on solutions, such as your suggested accommodations and how they help you to do your job. You may decide to give your employer a note from your doctor that outlines your condition and any recommended accommodations.

The process is supposed to be a back-and-forth dialogue, so your employer may take down notes and get back to you with their response to your requests.

Be prepared for your company to agree to none, some, or all of your requests. They may also suggest alternative solutions that may or may not work for you. Negotiate as much as possible while explaining why their recommendations are not sufficient.

You can continue the discussion after the meeting by sending an email to your employer to document that the meeting took place and outlining any accommodations that were agreed upon.

Even though retaliation for requesting disability accommodations is illegal, it does happen, so make sure to document in detail all discussions, including texts and emails.

Additional considerations

There are other factors to keep in mind before speaking to your employer.

  • Legal guidance: If you believe your employer will not be receptive to your requests, consider first consulting with a disability rights attorney on how to handle disclosure of your condition and protect your rights.
  • Social support: Connecting with hemophilia peers, such as those in the Hemophilia News Today Facebook group, can provide a way to get advice from people who may have dealt with similar challenges.
  • For union members: If you belong to a union, you may want to contact a union representative beforehand for guidance. You can also ask them to attend the meeting with you.

Other resources you can consult include:

Although disclosing your condition in the workplace can be difficult, preparation can help you navigate it. With the right information and a clear action plan, you can do your best to advocate for your rights and prioritize your well-being.

Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.


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