Figuring out when and how to tell your employer about your paroxysmal nocturnal hemoglobinuria (PNH) can be daunting. The hope, of course, is that your employer will respond with respect and compassion.
By educating yourself about your rights in the workplace, you’ll be better prepared to navigate accommodations planning for PNH.
Know your rights
There are protections on both the federal and state levels for people who are living with PNH.
For example, the Americans with Disabilities Act (ADA) prohibits employment discrimination against people with disabilities and requires employers to engage in an interactive process to form reasonable accommodations.
Check your state government’s websites for local laws related to disability. These websites can help you stay up to date about current federal laws in the U.S. that protect you in the workplace:
If you belong to a union, a union representative may be able to provide guidance specific to your job. They may even attend your meeting with your employer.
If you believe your workplace may be discriminating against you, consider consulting your union or a disability rights attorney.
Prepare for your discussion
Deciding when to tell your manager or employer that you have PNH is a personal choice.
Many variables may play into your decision, including your unique circumstances.
While uncertainty about an employer’s reaction may make you hesitant about revealing your diagnosis, you may not have the option of waiting if you need to be hospitalized or symptoms are affecting your ability to meet your work goals.
If you are not sure what to do, you may want to discuss it with a disability rights attorney.
While your employer may have their own ideas of how they want to address your request for accommodations, you know your PNH-specific needs best. Write down what types of accommodations you need to help you do your job and give you peace of mind.
Some accommodations you might request:
flexible hours or sick days for medical appointments, illnesses, or hospitalizations
frequent breaks for fatigue
a private area to rest.
You may want to support these requests with a note from your doctor that outlines your PNH needs and recommendations.
Rehearsing the conversation with a friend or family member ahead of time may help you feel more confident. If you know someone who works in management or human resources, you may want to try role-playing.
Manage the discussion
You should come to the meeting prepared to negotiate. Your employer might not accept every idea, so consider what compromises you are and are not willing to make.
Do your best to help your employer understand that the accommodations you are requesting will help you do your job as well as possible.
To take into account anything unexpected, let your employer know during your discussion that you’d like to schedule a check-in date to assess and make any needed changes to the accommodation plan.
Although retaliation for requesting disability accommodations is illegal, it can happen, so keep detailed records of all discussions, including texts and emails.
Plan next steps
After your meeting, write down what was discussed. Share it by email with your employer to document what took place. Include the dates of all discussions, what was agreed upon, and any next steps and when.
Follow up by email if you don’t receive a reply as you want to confirm they saw it.
Keeping a clear record can support ongoing conversations about accommodations that consider both your health needs and your responsibilities at work. It may also help you and your employer find solutions that make it easier to manage PNH and your job.
PNH News 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.
