Kidney disease can sometimes make you feel like you’re riding a rollercoaster of emotions which can change from day to day – even by the hour. This is all perfectly normal.
You may be...
- trying to come to terms with some of the potential implications of kidney disease – restrictions to diet, daily routines, work and social life (especially if you are on dialysis)
- experiencing emotional highs and lows as you prepare for a kidney transplant or as you adapt to life post-transplant
- concerned that your kidney disease may be affecting your relationships with your loved ones or affecting their emotional wellbeing
- Worried about finances, especially if your illness has forced you to reduce your hours or give up work completely
- at a stage in your life where you feel that treatments which manage the symptoms of your kidney disease (conservative care) may outweigh the benefits of dialysis
Your mental health is just as important as your physical health so try not to bottle feelings up. It can help to talk to other people about the way you’re feeling.
Talk to your doctor
The emotional impact of kidney disease can create physical side effects such as:
- Difficulty sleeping
- Loss of appetite
- Lack of energy
- Low mood
- Anxiety
- Decreased interest in sex and/or difficulty becoming sexually aroused
Talk to your doctor if you are affected by any of these issues. They can help you to find ways to deal with them. For example, they may prescribe antidepressant or anxiolytic (anti-anxiety) tablets for you.
Talk to your loved ones
Your family and friends may be experiencing a lot of the same emotions as you but they may be afraid to tell you how they’re really feeling for fear of upsetting you. Similarly, you may be trying to put on a brave face for them. For example, you may be feeling low after receiving a kidney from a close friend or family member but feel you have to hide your true feelings for fear of appearing ungrateful.
Talking to your loved ones can help to reduce worries on both sides. You may find that involving them in your kidney disease self-management can help too, for example, asking them to come along to your doctor’s appointments or dialysis sessions or writing a weekly meal plan together. This can save you from having to explain things to them and it can help them to understand your condition better.
Talk to a counsellor and social worker
Sometimes it can be helpful to speak to someone outside your family and friendship circles, such as a renal counsellor (for emotional support and mental wellbeing) and a renal social worker (for financial support and benefits advice).
- Ask your kidney unit to put you in touch with a local counsellor or social worker
- Visit Kidney Care UK – for advice and support (including financial assistance and access to a free counselling service
- Call the National Kidney Federation’s free helpline on 0800 169 09 36 for a wide range of kidney disease-related information, including benefits advice.
Be kind to yourself
It’s perfectly normal to experience a range of emotions as a person with kidney disease. It’s not a sign of weakness so don’t be afraid to ask for help if your feelings are affecting your quality of life.
Patient stories
"I was offered one-to-one counselling. She’d come and sit with me while I was on dialysis to avoid me having to spend even more time in hospital – because time is very precious to me. I’ve got my family to think of and I work full-time."
James Fenwick
Talk to other patients
Many people find it helpful to talk to other kidney patients – either face to face, over the telephone or online.
- Ask your kidney unit for the names and contact details of patient groups in your area
- Contact The National Kidney Federation – a national kidney charity run by kidney patients
- Get information about rare kidney diseases and contact details for associated patient support groups at: http://rarerenal.org/patient-information/
But try to keep things in perspective. Some people may have had very bad experiences in terms or their health and treatment. But everyone is unique so don’t think that these problems and experiences will automatically happen to you too.
And remember to double check any hints and tips with your kidney specialist or your nurse specialist at your kidney unit to ensure that the advice also applies to you and will be of benefit to you.
Emotional support for kidney donors
Some kidney donors can feel a sense of anti-climax and possible sadness after a kidney transplant operation because of the time and effort spent planning for and thinking about the operation and the potential outcomes.
They can also get support and information (including a leaflet entitled: ‘How do living donors feel afterwards?’ from the National Kidney Federation.