Whether you are new to a job or have worked at the same company for a while, you might wonder whether you should tell your boss or co-workers about your rare kidney disease.

Ultimately, whether you share is up to you. Here are some factors to consider as you decide whether to tell the people you work with about your complement 3 glomerulopathy (C3 glomerulopathy, or C3G) or immune complex membranoproliferative glomerulonephritis (IC-MPGN) diagnosis.

Identify Your Goals for the Conversation

Before you decide whether to tell your boss about C3 glomerulopathy or IC-MPGN, it may help to think about what you hope to gain from the conversation.

Some people may want more support at work. Others might want their co-workers to be aware that symptoms or medical appointments could affect their schedule.

Think about how C3G or IC-MPGN affects your work. Are you experiencing symptoms, such as fatigue or edema, that disrupt your work or make it difficult to complete tasks? Do you need time off for appointments, lab work, or infusions?

If your boss knows you’re managing a rare kidney disease, it may be easier to explain why you need time off, schedule changes, or temporary adjustments.

Even if your condition isn’t affecting your work right now, it may still be helpful to talk with your boss. Doing so can help set expectations if you need these adjustments in the future.

Determine How Much You Want To Share

Since C3 glomerulopathy and IC-MPGN are rare kidney diseases, you may worry that your boss or co-workers won’t understand your condition. It can be tiring to explain the condition and how it affects you, but you don’t need to share every detail.

Simply saying that you have a medical condition may be enough. You can also focus on what you need at work rather than the details of your diagnosis. For example, you might say:

• “I have a medical condition that requires regular appointments, so I may need some flexibility with my schedule.”
• “I’m managing a rare kidney disease, and fatigue can sometimes affect my workday. I’d like to talk about options for breaks or scheduling.”
• “I don’t feel comfortable sharing all the details, but I can provide documentation if needed for accommodations.”

It’s also OK to share in stages. For example, you might first say that you have a medical condition that requires appointments. Later, if you need more support, you can decide whether to offer additional details.

Know That Medical Privacy Matters

Sharing a diagnosis at work can feel vulnerable. You may worry about being treated differently, missing out on opportunities, or having co-workers find out. These concerns are understandable.

If you request a formal accommodation, your boss and the human resources (HR) department may need some medical information to understand your limitations and what support would help. However, your health information should generally be kept confidential.

Before sharing your diagnosis, you may want to ask HR questions such as:

• Who will have access to my medical information?
• Will my supervisor be told my diagnosis or only my work restrictions?
• What documentation do you need from my doctor?
• How are accommodation requests handled?

Consider Your Timing

There may be times when telling your boss becomes more helpful or necessary. For example, you may need support if you’re:

• Starting a new treatment
• Having more frequent symptoms
• Missing work for appointments
• Preparing for a kidney biopsy or other procedure
• Managing worsening kidney function
• Starting dialysis
• Recovering from a hospital stay
• Planning for a kidney transplant and recovery

You don’t have to wait until you feel overwhelmed. Talking with your employer early may help you make a plan before your symptoms or appointments start interfering with your job.

On the other hand, if you’re newly diagnosed and still processing what C3G or IC-MPGN means, it’s OK to take your time. You may want to speak with your nephrologist, a social worker, the HR department, or a trusted loved one before deciding what to say.

Decide Who To Tell

You may decide to talk with HR but not your direct supervisor, or you might give your supervisor only the basics. Some people also tell a trusted co-worker, especially if they may need help during a flare or emergency.

Before telling co-workers, consider whether sharing will help you feel supported or may lead to unwanted questions. Once information is shared casually, it may be harder to control who knows.

Prepare for the Conversation

Planning ahead can make the conversation feel less stressful. Before you talk with your boss or HR, write down a few notes. Consider:

• What work tasks are becoming harder
• Which symptoms or treatments are affecting your schedule
• What changes would help you keep doing your job
• Whether your needs are temporary or ongoing

You can also get documentation from your healthcare team before the conversation. However, you may want to wait to see what information your employer needs.

Remember That Talking to Your Boss Is a Personal Decision

Telling your boss about C3 glomerulopathy or IC-MPGN is a personal decision. You don’t have to share your full diagnosis unless you choose to.

Think about what support you need, who needs to know, and how much you feel comfortable sharing. A thoughtful plan can help you protect your privacy while getting the support you need to manage your work and your health.

Join the Conversation

On MyKidneyDiseaseTeam, people share their experiences with kidney disease, get advice, and find support from others who understand.

Does your workplace know about your C3G or IC-MPGN diagnosis? Let others know in the comments below.