Coping with a long-term health condition or terminal illness

Being diagnosed, and living with, a long-term or terminal health condition isn’t just about your physical health. It can take its toll on your mental health, too.

So, what is a long-term condition?

This is a health condition with no known cure, that may last for years managed with medication and treatments. You may also hear them referred to as ‘life-limiting’ or ‘chronic’ conditions - examples are cancer, diabetes, heart disease and arthritis. It’s estimated that around 26 million people in England have at least one long-term condition.

What is the difference between terminal illness and long-term illness?

While a long-term, or chronic, illness can be debilitating and difficult to manage, they are not the same as a terminal illness. A terminal illness is one that cannot be cured and is likely to lead to someone’s death. People with a terminal illness may live for days, weeks, months or sometimes years following a diagnosis. No two experiences are the same.

It might also be important to note that some long-term conditions can develop into terminal illnesses. If you have any concerns about this, it’s important that you speak to your doctor.

How you might feel when you are diagnosed

When you hear that your health condition cannot be cured, it can stir up a wide range of emotions. There’s no wrong or right way to react – you may feel shock, anger, fear, sadness or numbness. All of these are perfectly normal emotions. You may also feel isolated, even if you are not on your own.

You may experience a range of different powerful emotions as time passes. This is also completely normal.

Coping with everyday life after a terminal diagnosis

Living with a terminal illness can be overwhelming, as you juggle all the questions you have with worries about your future. There are a few things you could try to ease the mental burden.

The below tips could also be useful to someone living with a long-term condition:

- Take each day at a time

You don’t have to do everything at once, so set yourself small achievable goals. Achieving a small goal – like putting family photos into an album – can give you the confidence to tackle bigger ones.

Embrace your good days. For those days that are a little more challenging, look to your small goals – this has the ability to strengthen your mental health.

- Try talking

Talking about your feelings with friends and family is a good way to cope with your situation and help your mental wellbeing. But if your loved ones are also working through their own emotions, you might find it helpful to talk to someone outside of your close circle – a doctor or nurse, counsellor or The Samaritans, for example. You may also be able to find a condition-specific support group online.

Remember, there are no stupid questions. When you ask a healthcare professional questions about things that are concerning you’ll get the facts, rather than turning to ‘Dr Google’.

- Make a note of your worries

This can help you to feel more in control. It will also be easier to talk through your questions with your family, friends or medical team if you have your worries written down.

It’s normal to feel worried under these circumstances. However, if powerful feelings of low mood, anxiety or depression leave you unable to cope, it may be helpful to talk to your doctor.

- Be kind to yourself

Accept offers of help. For example, let friends pick up shopping for you or take you to appointments. Or you could treat yourself to complementary therapies, like a massage, if that will help – you could also take a friend for company.

Taking exercise – such as going for a walk or swim, or doing some stretches – can have a positive impact on your mental health, as well as physical.

Where can I find help?

Your hospital team or GP should be able to provide you with information about the support that’s out there for you. This can include local support groups and counsellors. They should also be able to give you details of where you can find out what financial benefits you can access. This could help ease any worries you have about money.

Whether you are suffering from a terminal condition, or you’re supporting someone in this situation, the Dying Matters website offers advice and support for a wide range of issues.

Additional support at your fingertips

Benenden Health members can call the Mental Health Helpline if they are affected by a long-term or terminal health condition. The helpline can offer 24-hour support from a qualified therapist. Members can also benefit from the Care Planning and Social Care Advice service to help you make informed decisions about future care needs.

As well as access to mental health support, Benenden Health also have grants available for those suffering from long-term illnesses, which are not covered by your Benenden Health membership. These grants provided by the Benenden Charitable Trust can go towards the cost of specialist equipment, holidays or just to help you cope during this difficult time.