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Receiving a diagnosis of chronic illness.

Coping with kidney failure isn’t just about the physical symptoms. It will have a major impact on your life that can cause a great deal of stress and can create a range of feelings and worries.

Receiving a diagnosis of a chronic or life-limiting illness will, no doubt, have a devastating effect on how you have previously chosen to continue with your preferred routine. All of a sudden someone is telling you that you are unwell which, in itself, could be a shock and frightening. Initially, you could be relieved that now there is a diagnosis you know what has been making you feel unwell and options for treatment can be discussed and started.

However, there are also the practical things you start to consider such as – what about my job? What am I going to do about money? Is my family going to cope? And even, am I going to cope? It is highly likely that once you get home you will kick yourself for not asking more questions, but don’t forget the news you have just received about your illness is going to be a shock, and even though as humans we are capable of achieving great things, shock itself, can prevent us from absorbing information being given to us.

It’s a fact of life that, as patients, we are happy to discuss the physical symptoms of kidney failure but we are less comfortable discussing how it makes us feel. Often, we don’t like to worry those close to us so we tend keep our true feelings bottled up. All of this impacts on our mental health so it is important that your mental wellbeing is maintained as well as the physical effects of kidney failure. Because we don’t like to discuss how we are feeling it is easy to think that you’re “on your own” and that no one understands what you’re going through.

Some of the feelings you may be experiencing could be: 

  • Denial - Refusing to accept that you are not well or the inability to follow medication and treatment plans.
  • Anger - Why me? Blaming ourselves or even blaming others for not recognising something was wrong. Anger can fuel additional strain on relationships both professional and personal.
  • Low mood - Lack of energy and nausea are common symptoms of kidney failure and this in itself can fuel low mood.
  • Fear - What’s going to happen? How am I going to cope? How is the family going to manage?

All of the above are common effects on psychological wellbeing. This is a process of grief. After all your physical health has changed, it’s going to impact on day to day life, work, family commitments, finances and relationships. Also, your loved ones may not want to discuss their true feelings as they don’t want to worry you and/or they don’t want their worries to transfer to you as they feel you have enough to go on with.

You may well feel that you are finding this difficult physically, emotionally and mentally. Some of the physical experience may include lack of sleep, diminished appetite, and lack of energy and even loss of sex drive. The emotional impact can result in low mood, anxiety, panic attacks, feelings of being a burden on others, guilt, loss of control, unacceptance and disbelief all of this could also lead to non-compliance of medical direction or treatment. You may be experiencing symptoms such as confusion, lack of concentration, forgetfulness.

Talking about your feelings

Talking to someone about how you are feeling is very important as you do not have to deal with this yourself. You can discuss things with members of your renal team e.g. doctor, renal nurse, family, friends and even other patients. If your unit has a renal social worker then they can support you on a practical and emotional level. An important thing to remember is don’t be hard on yourself. You are bound to be on an emotional highway; changing how you feel and finding yourself going from the fast lane to the slow lane.

Another thing to be mindful of is the amount of information you will be given once you are diagnosed as it can be overwhelming. Don’t worry, write down your questions, pick up the phone or ask at clinic. A member of your renal team can support you with any questions you may have. You could even go online for support and the NKF (details of these are at the end of this leaflet).

Talking is an important tool - it helps you understand what is going on, why you are feeling a certain way and once you do this then you can start to make plans and create coping strategies. Some renal units have councillors to hand as well as doctors, nurses and social workers.

There is lots of support out there with many different organisations offering help and advice. The key is don’t be afraid to talk or ask questions. Once you understand your diagnosis and the impact it can have you will be well on the way to recognising that this is just another rung on the ladder of life and that you, like everyone else can decide how to live your life.

Just remember you are not alone and there is help and support out there for you.

Sources of support

Your renal unit may have a dedicated psychologist or counsellor that you can speak to. Ask your kidney doctor/ nurse or GP for a referral to specialist support if you feel this will help

  • National Kidney Federation (NKF) This is the largest kidney patient charity in the UK which is run by kidney patients to support kidney patients.
  • Support and information can be obtained by calling the NKF Helpline to speak directly to an experienced Helpline Adviser

The NKF Helpline is open from 9am until 5pm Mon-Fri and the free to call number is 0800 169 0936

Patient View -www.patientview.org  – online access to your health records. Ask your renal unit for details about how to join.

Written by Wendy Robinson
Specialist Senior Renal Social Worker, Hull RI

The National Kidney Federation cannot accept responsibility for information provided. The above is for guidance only. Patients are advised to seek further information from their own doctor.