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.

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.

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.

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.

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.

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.

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.

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).