Disclaimer: This post is not intended to be used as medical advice or as therapy.

Sitting in a chair at a doctor’s office in a hospital clinic. Your doctor sent you here for more tests. The room is white; it feels sterile. The doctor wears a lab coat, more for show than anything else, since no one is doing surgery here. The blood pressure cuff squeezes your arm. Again. It’s high. Of course it’s high—you’re waiting for an answer. And then the answer comes.

You have polycystic kidney disease (PKD)

What happens next? Do the words hit hard, stirring up shock or fear? Do you get a sinking feeling of recognition because you’ve seen loved ones go through this before, and now it’s you? Do the words feel distant, like you’re in a dream? Does this make everything make sense—or make it all more confusing? Do you feel hopeful, knowing that research may mean a different life for you than your family members? Do you feel clarity about what to do next, or like you’ve been handed a map with no landmarks?

The doctor is looking at you, trying to figure out how you feel about this news. What do they see?

The Part No One Tells You About

Doctors focus on the facts: the kidneys, the cysts, the long-term outlook, what treatment might look like years down the road. What they don’t always talk about is what it feels like to be the traveller.

Maybe you stare out the window on the ride home, wondering how to share the news. Maybe you push the diagnosis to the back of your mind and keep on with daily life. Maybe you Google late into the night, searching for stories that sound like yours.

Some people carry the map lightly; some clutch it tightly; and some toss it in the back seat—or even out the window.

Each Traveller Is Different

In the early stages, you may barely notice PKD. You might go months or years where the road feels smooth and unchanged. Or you may find yourself thinking about it often, like an unwelcome passenger who keeps speaking up when you’re trying to focus on other things. These shifts aren’t just about PKD itself—they’re also part of your mental health, the way your mind and heart respond to your news.

If you’ve watched family members walk this road, their stories may shape how you see your own. That can bring comfort—or worry. If you don’t have that reference point, you might feel like you’re in uncharted territory.

There’s no one way to react. Calm, fear, grief, gratitude, denial, curiosity: they can all show up, sometimes at the same time. However you feel, you’re not alone.

Finding Connection

It can feel isolating to hold a diagnosis that isn’t widely talked about. But if you zoom out, you’ll see there are others walking alongside you, even if you haven’t met them yet.

That’s where connection matters. Peer support programs, like those offered by the PKD Foundation of Canada, can connect you with others on the same path. Sometimes the greatest relief is simply hearing someone else say, “Yes, I’ve been there too.”

What the Road Ahead Might Feel Like

There will likely be stretches of smooth driving, and stretches where the road feels bumpy. Some moments—like a new symptom, an upcoming test, or a question from a loved one—might make the diagnosis feel suddenly close again. Some people go months or years without thinking much about PKD, aside from occasional appointments. Others feel the diagnosis hovering in the background every day.

You may find your relationship with yourself shifting too. Maybe you guard your time and energy more carefully. Maybe you lean more on family—or maybe you crave more time to yourself. Maybe you notice new meaning in everyday moments. However this shows up for you, it’s part of your journey.

Where to Turn for Support

There’s no single “right” way to move forward. Some people dive into research; some live as if nothing has changed; and some pause and take their time. What matters is remembering that you don’t have to do this alone.

Support might come through the PKD Foundation of Canada, through a therapist or counsellor, or through trusted healthcare providers who recognize that mental health is an important part of living with a chronic condition.

Carving Your Path

Carving Your Path

Each person is different. Each reaction to the news of a PKD diagnosis is different, and every single one of them is ok. There is no right or wrong way to react; there is no normal way to think or feel. If you’re feeling like your world is turned upside down or like this no big deal and can be dealt with later, or anything and everything in between, it’s all ok.

The key to carving your own path is knowing yourself. Are you the type of person who needs to learn everything you can? There are excellent resources available to help you understand PKD. Do you need a strong support system when things get difficult? Reach out to your family, friends, or professionals who can help you cope. Do you do better by not thinking about future possibilities that you can’t change? Honour that, too. Do you feel compelled to live your life in the present moment? That’s also valid.

The road doesn’t have to be travelled all at once. Caring for your mental health as much as your physical health can help you feel steadier as you move forward. One step, one breath, one conversation at a time is enough.

About the Author

Joy Pekar is a Registered Psychotherapist (Qualifying) whose professional practice is shaped by personal experience. Joy’s family has been directly impacted by polycystic kidney disease (PKD)—a journey that has included searching for a kidney donor and navigating the emotional complexities of dialysis and transplant. With this deep understanding, she helps individuals and families cope with the emotional toll of chronic illness, particularly kidney disease, offering compassionate support and mental wellness strategies.

More

• Watch a webinar led by Joy Pekar on the topic of Mental Health & PKD
• Watch a webinar led by Joy Pekar on the topic of Medical Trauma & PKD
• Learn more about working with Joy Pekar
• Browse our other Mental Health blogs