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Children or young adults who have chronic kidney disease may be asked questions by classmates, teachers, professors, and school administrators.
These questions may come up because of missing school or because kidney disease can sometimes affect their participation in school and extracurricular activities.
It’s your choice whether to share details about your kidney disease diagnosis with people at school. If you decide to talk about your kidney disease, it can help to have a plan in place.
Keep reading for tips on how to discuss a rare kidney disease at school, along with strategies for requesting school support.
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One reason people may choose to discuss their kidney disease at school is that the condition can involve emotional, social, or developmental challenges. Others may also notice that you’re missing school due to doctor appointments or dialysis, taking medications during class, or participating differently in some extracurricular activities.
If your classmates or teachers notice any differences between you and other students without an explanation, you might feel isolated. This can affect your self-esteem and may make it even harder to connect with others. For that reason, some people choose to talk about their kidney disease at school.
Deciding whether to reveal your condition to classmates, professors, teachers, and others can be difficult. There’s no single right way to talk about having kidney disease. The choice depends on how you feel and how comfortable you are with the people around you at school.
You may have legitimate reasons why you prefer not to disclose a kidney disease diagnosis. However, sharing information about your condition may make it easier for others to understand your needs and offer support.
Advantages of sharing this information include:
In addition, sharing your diagnosis can help you self-advocate when you need support.
You can decide how much to share based on who you plan to speak with about your kidney disease. For example, you may want to tell your school friends about any activity or eating restrictions related to your kidney disease. You can explain why you have restrictions, as well as what you can still do.
Some people choose to speak with teachers and professors about medical appointments and medication schedules. That way, educators can be more prepared if you need to take time off or you’re late to school.
School administrators may need to know if you require accommodations at school. For instance, if you need expanded bathroom access or special foods in the school cafeteria, they can help you create a plan for that.
After you decide what to disclose, choose how you plan to do it. Some people want to share information about their kidney disease during a face-to-face conversation. Others may want to send a text or email, or to chat on the phone.
If you’re looking for another way to explain your condition to teachers or school administrators, consider asking your healthcare provider for a letter describing your condition and any support you may need. That way, they can read about it directly from a medical professional.
In addition, the Rare Kidney Source offers free, downloadable explanation letters about two rare kidney diseases: C3 glomerulopathy (C3G) and immune complex membranoproliferative glomerulonephritis (IC-MPGN).
Think about what would be most comfortable for you. Then you can develop a list of things you want to talk about.
Some people are nervous about disclosing a kidney disease diagnosis because they’re afraid they’ll be treated differently or that they’ll get unwanted attention. But there are easy ways to introduce the conversation that will help make it more manageable.
You might want to open the conversation with information about your condition, and then transition into what you can and can’t do. It may also be helpful to explain what types of support would help you.
For example, the American Kidney Fund suggests saying something like, “I’d like to share something important with you. I have a rare kidney disease. I can still do the things we usually do together, but I need to take medicine every day and go to regular doctor appointments.”
Tailor what you say based on who you’re talking to and what support you may need. The conversation example above may work well with friends, but you may need to be more direct when speaking with school administrators.
Federal disability laws can provide eligible students with kidney disease access to supports and accommodations that help them participate in school.
In elementary and secondary school, some students may qualify for an individualized education program (IEP) or a Section 504 plan. College students can also request disability accommodations, but colleges generally do not use IEPs.
If your child is in elementary or secondary school, ask the school administrator or counselor about an IEP or a 504 plan. If you’re in college, contact your school’s disability services office about requesting accommodations.
You might need input from your nephrologist or another healthcare provider. They can help explain your limitations and abilities to people at your school.
A 504 plan can provide accommodations that help a student participate fully in school. This plan may allow students to:
An IEP can help students access more services at school, such as:
Under FERPA, school officials may access your education records without consent when they have a legitimate educational interest, which may include information in your IEP or 504 plan.
Schools have criteria for determining who has a legitimate educational interest in your records. Ask your school for specifics about who may have access to records that include details about your diagnosis and accommodations.
You get to choose who knows about your kidney disease and how much they should know. In some cases, you might decide to share information about your condition with others who you come in contact with during the school day. This may include people who:
Clear, respectful communication with school staff can help make sure the people who need to know about your health needs are prepared to support you.
On MyKidneyDiseaseTeam, people share their experiences with kidney disease, get advice, and find support from others who understand.
Did you share information about your condition with people at school? Let others know in the comments below.
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