This article explains what “disclosure” means in practice, why it can be a bigger question for a teenager with ADPKD than it looks, the difference between people who may need to know something and people you might want to tell, how much to say, and how to start the conversation when you decide to have one. It provides background and vocabulary, not medical advice or counseling. For friends and most other people, who you tell and what you tell them is your decision, at your own pace. Where it touches your health, your safety, or your school, work it out with your parent or guardian and, where needed, your clinician or school staff.

What “disclosure” means, and why it is more than one decision

Disclosure is the word researchers use for telling someone about a health condition. It sounds like one big moment, but for young people with chronic conditions it usually is not. Studies of children and teenagers with a range of conditions find that keeping the condition private is the most common pattern, and that those who do tell make selective, case-by-case choices: this person but not that one, the short version here and the full version there.[1,2]

It helps to break the question into five: whether to tell, when, how, what, and to whom. You can answer them differently for different people: a coach gets one specific fact, a best friend the whole story, a classmate nothing at all. Each is a complete answer.

Two things make ADPKD a little different from the conditions in most of that research. First, it is usually invisible: even when you have symptoms, they are not ones other people can see, so nobody knows unless you say so. You have more control than someone with a visible condition, and the question never answers itself. Second, ADPKD is inherited. When you say “I have ADPKD,” you are often also saying something about a parent, a grandparent, or a sibling. Part of the information is yours, and part of it belongs to your family too.

Why this can matter for a teenager with ADPKD

In interviews with adolescents with ADPKD in 13 countries, some described not doing things with friends because they wanted to keep the condition private, avoid being teased, or avoid feeling different, and a few said they simply did not talk about it with friends at all.[3] One put it as, “You can’t really talk about it with anybody.” A similar issue appears in research with young adults with chronic kidney disease: deciding whether and when to tell friends and prospective partners was a major relationship challenge participants described.[4]

There is a quieter version inside families. In the same interviews, some teenagers said they held back from telling a parent about symptoms to avoid worrying them, or because a parent with ADPKD already had enough to carry.[3] That is a disclosure decision too, and one worth knowing you are making.

Disclosure cuts both ways. In the research on young people with chronic conditions, telling someone has been linked to confidence and speaking up for yourself, and also sometimes to distress.[1] The point is not that telling is good or that privacy is good. It is a real decision with real consequences either way, which is why it deserves thought before the two-second moment arrives.

Who may need to know, and who you might want to tell

A useful first sort is between people who may need a specific fact to do their job, and people you might want to tell because of who they are to you.

People who may need something specific. Some adults are responsible for you in a setting where a fact about ADPKD could matter: a school nurse, if you take medication or have a plan for pain episodes; a coach, if your care team wants an adult to know what to watch for after a hard hit; a teacher, if you leave class for the bathroom or carry water. They may need only the facts that matter in that setting, not your whole medical history. At school, a 504 plan or a note from your clinician can put the information in the right hands without you explaining it in a hallway. (A separate PKD Bridge article addresses 504 plans and school accommodations.)

People you might want to tell. A close friend, a teammate, a person you are dating, an aunt, an activity leader you trust. Nobody in this group has to know. The reasons to tell them are different: not having to hide, having someone who understands why you are tired or worried, being known. In studies of adolescents with chronic conditions, the friends they told were the ones they trusted and expected to respond well; the reasons for holding back were fear of pity, rejection, or being seen as fragile or different.[1,5] The two lists get confused: telling the school nurse can feel like telling “the school,” and a coach knowing can feel like a friend should know too. The need-to-know list can usually be handled through your parent or guardian and your care team, quietly and in writing. The want-to-tell list is yours, with no deadline.

How much to say

You do not have to choose between silence and the full story. Telling part of it is one of the ways young people with chronic conditions actually handle this, and it is a legitimate choice, not a half-measure.[1] It helps to have three versions ready so you are not building one in the moment.

The one-liner. Enough to answer without giving the full story. If water is part of what you need, the one-liner might be: “I have a kidney condition. I just have to keep water with me.” A short version works when someone is curious rather than close.

The practical version. What the person needs to know or do differently, without the rest of your medical history. For example, if pain is something you deal with: “I have a kidney condition. Sometimes I get back pain and need to sit out for a bit. If that happens, I’ll tell you.” This is for a coach, a teacher, or a friend you are about to spend a weekend with.

The full version. What ADPKD is, that it runs in your family, what your appointments are for, what you worry about. This is for the want-to-tell list, when you decide you trust someone with more of the story.

You may leave the future out of every version. “Does it get worse?” is a real question, but one you may still be working out with your clinician, and “I don’t know yet, that’s something I talk about with my doctor” is a complete answer.

People who may be able to help

  • Your parent or guardian. They may have made or helped with many of these decisions when you were younger and may already have told the school, a coach, or relatives. Find out what has been said first; then agree on what is theirs to tell and what is yours.
  • Your kidney doctor or care team. They can help identify which facts matter for safety in a particular setting and which do not. They may also be able to write a short note for a school or coach that includes only the relevant information.
  • A school counselor or school nurse. They can explain how health information is handled at your school, who would see a health note, and whether the information can be limited to the people who need it. They are also a low-stakes place to practice saying it out loud.

How to start the conversation

The hardest part is usually the first sentence, so decide it in advance. What follows are starting points, not scripts.

With a friend. “There’s something about me you don’t know, and I want to tell you because I trust you.”

With a coach or activity leader. “I have a kidney condition called ADPKD. There’s one thing my doctor wants you to know about while I’m playing.”

With a teacher. “I have a medical condition that means I may need to leave for the bathroom and keep water with me. I’d rather not discuss the medical details in class.”

When someone asks a direct question you were not ready for. “Long story, I’ll tell you sometime,” or “It’s a kidney thing, I’d rather not get into it.” Both buy you time.

You do not have to be the one who says it. A parent or guardian can say it for you, or the school nurse can pass on what a teacher needs. Letting someone else do the first telling is a real option. Be clear about what you want that person to say and, more importantly, what you do not.

Pick the moment. A calm, private moment beats a rushed one in a group, and the end of a good day beats the moment right after you had to leave something early.

Questions worth asking

For a parent or guardian:

  • Who already knows? The school, my coach, which relatives?
  • Is there anything you would rather I not say about you or the family when I tell people?
  • If I want to tell a friend, is there anything I should know first?

For your clinician:

  • Is there anything about my ADPKD that a coach, a teacher, or a trip leader actually needs to know for my safety?
  • Can you write a short note that says only that?
  • Who do you share my information with, and does my school ever hear from you directly?

For your school counselor or nurse:

  • If I give the nurse a medical note, which staff members see it?
  • Can I keep it to the people who need it?
  • If a teacher asks me about it in front of the class, what should I say and who can I talk to afterward?

When to bring in your care team

Many disclosure decisions are personal or family decisions rather than medical ones. A few are still worth raising at an appointment.

  • If you have been keeping symptoms to yourself so as not to worry a parent. Your care team is a place to say it first, and they can help you decide how to tell your family.
  • If not telling anyone is starting to shape what you do: skipping things with friends, managing pain alone, sitting out because you would have to explain. Adolescents in the ADPKD interviews described giving up activities with friends to keep the condition private.[3] Your care team may be able to help you find a smaller, more private fix.
  • If a coach or teacher needs to know something for safety and you do not know what to tell them. That is a question for your clinician, not a guess.
  • If you told someone and it went badly, or the worry keeps coming back and you cannot put it down. Your care team can listen and, if it would help, point you to someone whose job that is.

Things to think about before deciding

It cannot be untold. Once someone knows, they know, and you cannot fully control what happens to the information afterward. That is not a reason never to tell anyone. It is a reason to start with the people you trust most and the shortest version that does the job.

It is also family information. Because ADPKD is inherited, telling someone about you often tells them about a parent or sibling. Some families are open about it and some are not. A quick conversation with your parent or guardian about what is yours to share, and what is theirs, can help prevent an awkward moment later.

Online is different. A post or group chat can be copied, forwarded, or seen by more people than you intended. Before sharing online, think about who can see it and how much detail you want attached to your name.

Not telling is a choice too. Keeping ADPKD private is not hiding, lying, or failing at anything. Keeping it private is the most common pattern among young people with chronic conditions.[1] It may be worth revisiting if privacy is starting to cost you something: sitting out, managing symptoms alone, or carrying it in a way that gets heavy.

It can change. The person you did not tell at 14 may be the person you tell at 17. You are allowed to open up later, and you are allowed to become more private later. Neither is going back on a decision.

If ADPKD runs in your family and you have not been tested

If a parent or sibling has ADPKD and you have not been tested, your disclosure question is a little different: it is about family risk, not a diagnosis. You can say “PKD runs in my family” without claiming a diagnosis for yourself.

Whether and when to be tested is a decision current guidelines treat as a careful, shared one between you, your family, and your clinician, weighing what knowing would change against the downsides of knowing early.[6] It should not be decided by a friend’s question or a form that asks for a diagnosis. “I don’t know, I haven’t been tested” is an honest and complete answer, and if a form asks for a medical history, ask your parent or guardian or your clinician what to write rather than answering alone.

What this can feel like

Telling someone can feel like being exposed, even when it goes fine. You may find yourself waiting for the other person’s face to change, then feel a small drop when it does or a small relief when it does not. Both are normal. So is the odd feeling, after telling a friend, of not knowing what you want them to do with it.

Being treated differently is a fear that comes up again and again in the research, and it is not imaginary.[1,5] Some people will fuss, some will pull back, and some will make it the first thing they think of when they see you. Others may barely react, which can be its own relief. Some of the adolescents in the ADPKD interviews said they wanted to see themselves as normal and did not want to think about the condition.[3] Choosing who to tell, and how much, is one of the main ways to protect that. ADPKD is something you have, not who you are, and you decide how much room it takes up in each relationship.

If the question is taking up a lot of room anyway, or keeping it private has become its own kind of weight, that is worth saying to a parent or guardian, a counselor, or your care team. You do not have to carry it by yourself.

The bottom line

Who you tell about ADPKD, and how much, is a set of decisions, not one, and you can make them one person at a time. Some adults may need limited, relevant information to keep you safe or help you at school, and that can usually be handled through your family and your care team. Everyone else is a choice, with no deadline, that you are allowed to revisit. Have a short version ready, know what is yours to share and what belongs to your family, and start with the people you trust.

This article provides educational information to help you begin a conversation. It is not medical advice, legal advice, school advocacy, counseling, or crisis support. There is very little research on adolescents with ADPKD and disclosure specifically. Some of what is here comes from a small international study of adolescents with ADPKD, and some from research on young people with other chronic conditions or young adults with kidney disease, so it should be used cautiously as a starting point. For individualized decisions, talk with your parent or guardian, your clinician, and, where school is involved, your school counselor or nurse.

References

  1. Pathmalingam T, Moola FJ, Woodgate RL. Illness conversations: Self-disclosure among children and youth with chronic illnesses. Chronic Illn 2023 Sept;19(3):475–494. doi: 10.1177/17423953221110152
  2. Woodgate RL, Tennent P, Barriage S, Legras N. The centrality of disclosure decisions to the illness experience for youth with chronic conditions: A qualitative study. J Health Psychol 2022 Mar;27(3):521–533. doi: 10.1177/1359105320962242
  3. Oberdhan D, Schaefer F, Cole JC, Palsgrove AC, Dandurand A, Guay-Woodford L. Polycystic Kidney Disease–Related Disease Burden in Adolescents With Autosomal Dominant Polycystic Kidney Disease: An International Qualitative Study. Kidney Med 2022 Mar;4(3):100415. doi: 10.1016/j.xkme.2022.100415
  4. Coyne E, Langham H, Tomlin M, Hope W, Johnson C, Byrne C, Bebb C, Buchanan H. Young adults with chronic kidney disease: An exploration of their relationships and support networks. J Ren Care 2019 Mar;45(1):20–28. doi: 10.1111/jorc.12263
  5. Kaushansky D, Cox J, Dodson C, McNeeley M, Kumar S, Iverson E. Living a secret: Disclosure among adolescents and young adults with chronic illnesses. Chronic Illn 2017 Mar;13(1):49–61. doi: 10.1177/1742395316655855
  6. Devuyst O, Ahn C, Barten TRM, Brosnahan G, Cadnapaphornchai MA, Chapman AB, Cornec-Le Gall E, Drenth JPH, Gansevoort RT, Harris PC, Harris T, Horie S, Liebau MC, Liew M, Mallett AJ, Mei C, Mekahli D, Odland D, Ong ACM, Onuchic LF, Pei YPC, Perrone RD, Rangan GK, Rayner B, Torra R, Mustafa R, Torres VE. KDIGO 2025 Clinical Practice Guideline for the Evaluation, Management, and Treatment of Autosomal Dominant Polycystic Kidney Disease (ADPKD). Kidney Int 2025 Feb;107(2S):S1–S239. doi: 10.1016/j.kint.2024.07.009