Skip to main content


0300 111 1234


0300 111 1234

Living well

Whether you’re newly diagnosed or have been living with ADPKD (autosomal dominant polycystic kidney disease) for some time, having ADPKD is likely to affect you emotionally at times.

This web page brings together advice from other people with PKD and experts. We hope it helps you to find practical ways to live well with ADPKD and to feel freer and positive about the future.

Three ways to lighten the load of PKD

Polycystic kidney disease (PKD) is lifelong but it needn’t be life defining. Different people with PKD face different challenges and cope in different ways. Finding practical and emotional ways of coping that work for you can help you regain control of your life.

We asked 12 people affected by PKD to share the ways in which they cope. Some have PKD personally, while others care for a partner or family member with PKD. Each person coped differently, but three themes were common:

1. Be informed

Knowledge is power! Many people with PKD tell us that knowing more about the disease has helped them to feel in control. Being clued up can help you to look after your kidneys and protect your physical and mental health. You could research the best lifestyle and diet for you or the treatments and care to which you’re entitled, for example.

“Read up on the disease. Basically, stay well informed.
I found it took away a lot of the worry.” Julie

Get in the habit of asking questions of your GP, your kidney specialist and those with first-hand experience. You can find information on our website or through our online workshops, educational events or PKD helpline (0300 111 1234; open Mon to Fri 9.30 am to 5.00 pm, except bank holidays).

2. Talk to others

You may feel that others don’t understand your PKD. Sometimes, friends, family, colleagues and healthcare professionals may struggle to grasp how it affects you.

However, you’re not alone! Others with PKD may well have faced challenges similar to yours. They can listen and understand.

You can connect with people through our support groups, Facebook groups or PKD helpline (0300 111 1234; open Mon to Fri 9.30 am to 5.00 pm, except bank holidays).

Be open and honest with friends and family too, so they know how to help.

 “Join the Facebook group to hear the views and support from those who are experiencing or have experienced what you’re going through — who 'get it' when it comes to PKD.” Andy

3. Own your life

A philosophy of living life to the full — and not letting PKD rule your life — is shared among many people with PKD. This can be hard to do at times, but the mental shift can have a big positive effect. For some, it means taking each day as it comes. For others, it means staying active or not setting limits on what they can and can’t do.

Not letting PKD define your life is about staying positive and learning to adapt, but it’s not about powering on regardless. To stay strong emotionally and physically, accept when you need to recharge.

“Don’t let PKD interfere with life until it has to.” Melanie

See below for advice on positive thinking and being mentally resilient.

Expert online advice on coping

Although PKD brings unique experiences and challenges, coping strategies that can help are quite universal. Here is a collection of useful websites and resources on coping from other organizations. Some of these organizations specialize in kidney disease, while others have a broader focus.

Emotional Resilience. By Kidney Care UK and the Renal Association (UK)
Leaflet (PDF)
Introduces emotional resilience. It provides tips on how emotional resilience can help you to cope with stresses in your life.

Coping with Physical Illness. By the Royal College of Psychiatrists (UK)
Website  │  Video
Information to help you identify when you’re anxious or depressed. It covers when to seek help, treatments available, how to help yourself, and how friends and family can help too.

Dealing with anxiety. By the PKD Charity (UK)
Newsletter article (PDF)
How to recognize, accept and lessen feelings of anxiety.

Relaxation. By MIND (UK)
Website  │  Booklet (PDF)
8 ways to relax.

Mindfulness. By MIND (UK)
Website  │  Booklet (PDF)
Introduces mindfulness: a technique to help you feel more self-assured, calm, and able to cope. It gives exercises you can try right away and explains how you can learn mindfulness.

Positive Thinking. By The Mayo Clinic (USA)
A good starting point for people interested in positive thinking. It describes positive and negative thinking and explains how you can practice overcoming negative thoughts.

Talking Therapies and Counselling. By MIND (UK)
Website  │  Booklet
Explains what talking therapies are, what happens during therapy, how to get the most out of therapy, and where to find a therapist.

Cognitive Behavioural Therapy (CBT). By MIND (UK)
Website │  Booklet (PDF)
Explains the theory behind CBT, the conditions it can help to treat (including pain, anxiety and depression), what happens in CBT sessions, and how to find a therapist.

What challenges do people with PKD face?

People with PKD and those caring for them can face a range of challenges. Each person’s experience is unique and will change over time.

Here are aspects of PKD that 12 people with PKD told us can be challenging:

  • receiving a diagnosis
  • concerns about future health
  • not knowing when kidney function will worsen
  • financial concerns
  • others’ lack of knowledge and understanding
  • effect on day-to-day life
  • following a special diet
  • dialysis or a transplant
  • lack of support.

What emotions can PKD cause?

Receiving a diagnosis of PKD personally or hearing of a loved one’s diagnosis can be a very emotional time. Many people describe it as a time of crisis, although others feel numb at first.

Although people with PKD adjust over time, the ongoing challenges of living with the disease can sometimes cause intense emotions, stress, anxiety and depression. Some people with ADPKD describe it as an emotional roller coaster.

There may be particular periods when it becomes harder to cope, such as when waiting for a transplant. As your kidney function decreases, imbalances of chemicals in your blood and the side effects of medications can alter your emotions too.

Challenging emotions

Everybody is different. Below are some feelings that you may experience after a PKD diagnosis and at periods in your life. These are all emotions that people with or without PKD are likely to feel in their life. However, living with a long-term condition can make these emotions more frequent, intense or sudden.












Sadness or depression



Loss of confidence

Altered self-image



Exploring your emotions

Emotions are not random. They can remind us what really matters to us, although we don’t get to choose when they show up.

While we may crave moments of happiness and calm, being willing to experience (rather than ignore) more challenging emotions is important too. Being curious and kind in acknowledging your own emotions can help you to control their intensity and decide how to respond positively.  

Ask yourself what you’re feeling and why. This might take some time and space to do. Your emotions may show up in your body too, for example as tension.

To learn more about how to spot your emotions and process them, see Expert online advice on coping above.

Signs of stress

Living with PKD can cause emotional stress.

Recognizing the signs means you can be kind to yourself and get the practical and emotional support you need. Signs include:

  • feeling irritable, sad or guilty
  • problems concentrating or making decisions
  • increased or decreased weight or appetite
  • altered sleep patterns or difficulty switching off
  • loss of interest or enjoyment in hobbies or socializing
  • negative thinking.

Finding support

For different ways to get emotional and practical support, see the support area of our website.

There are many ways to connect, including support groups, Facebook groups, and via our helpline 0300 111 1234 (open Mon to Fri 9.30 am to 5.00 pm, except bank holidays).

Authors and contributors

Written by Hannah Bridges, independent medical writer, HB Health Comms using the views and feedback of people with ADPKD.

With thanks to all those affected by ADPKD who contributed to this publication.

Disclaimer:  This information is primarily for people in the UK. We have made every effort to ensure that the information we provide is correct and up to date. However, it is not a substitute for professional medical advice or a medical examination. We do not promote or recommend any treatment. We do not accept liability for any errors or omissions. Medical information, the law and government regulations change rapidly, so always consult your GP, pharmacist or other medical professional if you have any concerns or before starting any new treatment.

We welcome feedback on all our health information. If you would like to give feedback about this information, please email 

If you don't have access to a printer and would like a printed version of this information sheet, or any other PKD Charity information, call the PKD Charity Helpline on 0300 111 1234 (weekdays, 9am-5pm) or email 

The PKD Charity Helpline offers confidential support and information to anyone affected by PKD, including family, friends, carers, newly diagnosed or those who have lived with the condition for many years.