Living with chronic kidney disease can be overwhelming, but life can seem especially challenging if you have ADPKD. You may well have seen how the disease has affected your relatives and worry that your own kidney function may slowly get worse or about your children’s future.
Everyone is different, but it is quite normal for people with ADPKD to experience any or all of these emotions.
It can be hard to believe that you have ADPKD, especially if you have no symptoms. It is also natural to hope that it may somehow ‘go away’ if you ignore it. But try to accept your diagnosis, so that you can take active steps to learn about ADPKD, deal with your symptoms and protect your kidney function for as long as possible.
It is also natural to feel angry, particularly if close family members are unaffected by ADPKD. But don’t take your anger out on your family or friends, or try to cope with your feelings with alcohol or recreational drugs. These ways of coping just make things worse and may damage your relationships with the people who love and who want to help you — so get help and support as soon as you.
It is not unusual to feel sad or unhappy when you are living with ADPKD or any other chronic illness. It can be enough to simply talk over your feelings with someone who understands. But having a chronic illness means that you are more likely to develop depression, with symptoms such as irritability, problems in sleeping, loss of appetite, loss of concentration and apathy. Depression is more than just feeling sad. It is an illness, so talk to your doctor about treatment to improve your mood.
Anxiety about your own future is a common reaction in people with ADPKD, and you may also feel anxiety about children and other family members. Anxiety can build so that you cannot function, but talking about your anxiety with someone who understands can often put your feelings into perspective. If you feel so anxious that you cannot cope, talk to your doctor, as this sort of anxiety can be treated.
You may feel grief or a sense of loss for your life before ADPKD, or the life you had planned. Grief is painful, but acknowledging your loss will help you to take a positive approach to your condition and make plans for your future.
Kidney disease can be frightening, especially if a family member had a bad experience some years ago. The best way to help you to face your fears is to learn as much as you can about ADPKD, and talk to other patients about their symptoms and treatment.
Living with ADPKD is stressful. You may feel overwhelmed by having to manage your symptoms, while at the same time coping with work, education, your family and relationships. The first step is to recognise that you are stressed, and take some time out: try a new hobby or relax on a weekend away. Continuing stress can affect your health. So if you still find it difficult to cope, get some help and support as soon as possible.
The Royal College of Psychiatrists has some very good leaflets on physical illness and mental health, anxiety and depression, sleep problems and treatments.
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.
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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.