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Living With Terminal Illness

"The only way to make sense of change is to plunge into it, flow with it and join the dance." – Alan Watts

Learning that you are living with a terminal illness the ability to turns a patient’s whole world upside down and inside out. Patients are engulfed by a spectrum of intense emotions and can drown in feelings of numbness to anger and resentment. Understanding your emotions towards your terminal illness provides a solid foundation to overcome the fears you have surrounding your death.

There’s no right or wrong way to feel when you’re told you have a terminal illness. We all react to such news differently. Living with a terminal illness and hearing that it cannot be cured is a frightening experience. Many people will be unable to take everything in.

Seven Things to Consider When You are Living with a Terminal Illness

One of the worst things to happen to anyone is to be told that they have an incurable and terminal illness. As doctors, we know this because we have often had to break this bad news to many patients, and it is never easy. If you, or someone you know, are living with a terminal illness, here are some of the survival tips that many doctors have learnt over the years.

While they may not be useful to everyone, they may help start a conversation with those living with a terminal illness. At “Dying to Understand” we welcome your views and tips about how to manage a terminal diagnosis.

Having Perspective

You aren’t going to die today so there is no need to panic!

Life itself may be terminal. From the movement we are born, we are all faced with the fact that we are all going to die someday.

Being told that “your life is ending” simply makes this abstract truth a reality- only a little sooner than we’d like. It tells us that the adventure of our life is going to end sooner than expected. This encourages us to look at life from a different perspective- to find beauty and joy in things we normally wouldn’t otherwise.

We are told that now is the time to live, even if we are dying.

living with a terminal illness sitting on cliff

Using Your Time

The show ain’t over until the fat lady sings!

You are not dead yet! Patients living with a terminal illness often have two choices: accept the inevitable and get on with living or the other is to withdraw and get on with dying.

Living is much easier than dying. It does not matter how slowly you go as long as you do not stop. Don’t give up on life, you are still here. Having a fighting spirit and a positive mental attitude makes a world of a difference.

Having goals to and taking advantage of every opportunity is key to making the most of living. Look at all the options, check that you have all the facts. Work with your doctors and nurses to formulate a survival plan. Quality health services are essential to improving the quality of life in terminally ill patients. Preparing for death makes living all the sweeter.

living with a terminal illness clock

Understanding the Emotions of Loss

We have all suffered loss and disappointment at some point in our life. It may have been missing out on a promotion or being shunned by a high school sweetheart.

Being told that “you are going to die” can feel an overwhelming sense of dread and fear. The typical emotions of loss described by Dame Kubler-Ross are denial and shock, anger, bargaining, depression and finally acceptance.

These are normal emotions when living with a terminal illness. They will affect you and those who love you, so be prepared. Don’t be blindsided. It is important to understand that emotions are powerful and that they can be disruptive, but they don’t last forever. Emotions change, and over time, regardless of how dark the day may seem, there will be some light. Wait for it… expect it- It will come.

living with a terminal illness head in hands

Expect and Accepting Change

Life will never be the same again, but it can be better.”

Physically, and sometimes mentally, things will change. Illness will become a way of life, so work not to make it a part of death! Don’t let illness dominate the choices you make and the way you live life.

Even if it is not possible physically, try to find ways of being free of illness, mentally, even if it is for a short time. By looking for opportunities and doing the things you love you will add value to your life and defy illness. The hope is that “even though we limp, we may still be able to walk”.

In some ways, the changes that people face while living with a terminal illness can become a gift. It encourages them to refocus, find themselves, appreciate the value of life and, ultimately, become a better person. These changes are difficult and scary. Don’t be afraid to ask for help in managing and understanding these changes.

living with a terminal illness leaves

Being Courageous

Courage is already in you, it just needs to be released!

Those who say they do not fear death either do not fully understand it or they are lying. Everyone fears death and dying. Courage is not the absence of fear but the willingness to act in spite of fear. What are you going to do?

While you are living with a terminal illness it is important to talk about how you feel. Speak to someone, write it down in a journal or paint or do whatever it takes to get the emotion out. Don’t bottle it up. Support groups and professional help has also proven to have tremendous benefits to negate the strong emotions brought by the time you have left and bring you together with those in similar situations.

Also, consider opportunities along the way. What can you do to make your life, and perhaps the lives of others better?

Can you help us make dying journey easier by sharing your journey?

Finances of dying mountain climbing

Understanding the Journey

Apart from an unexpected or sudden death, every life has the same predictable journey. We are all born dependent and with limitations.

Our bodies grow to be at their peak around the age of 20. From then on it is a gradual decline with notable milestones as we pass, 60, 70 and 80 years. Eventually, either due to age or illness, our quality of life declines and we become more dependent and trailer, as we walk the path towards the ends of our life.

All life ends with a loss of function. The terminal phase only starts when our organs and body systems can no longer cope with the loss of function, not when we are told we have a terminal illness.

It is important to recognise when this is happening because it is the time to surrender to our common destiny. For those with faith, it is time to trust that God is ready to accept our souls into his gentle hands so that we can be with him eternally.

Finances of dying road in fall

Being Kind To Yourself

“Be nice to yourself! It’s hard to be happy when someone is mean to you all the time.”- Christine Arylo

Dying is not your fault. It is something that is going to happen to all of us, eventually.

There is no correct way to deal with a terminal illness. You will experience a tremendous range of emotions, from anger and resentment to fear and depression. Some days will be better than others. Forgive yourself for the times when you don’t handle something as well as you’d like to.

Give yourself a break and be kind to yourself on this uncertain journey. Do not beat yourself up, feel guilty or be depressed about something that never was in your control in the first place. It may be hard but look to the future while living with a terminal illness. Have you considered the next step afterlife, the promise of redemption, the gift of eternal life and being united with a God that loves you?

what is palliative care hands and ring

Living With A Terminal Illness

Hold Hope Close and Seize the Day

Starting a conversation about living with a terminal illness is the first step in coming to terms with the death and what that means for you. Although it can be a daunting prospect, living for you and those around you can make a huge difference in the overall view you hold about your short, but the incredibly meaningful, journey.

Hold hope close. Seize opportunities to make life beautiful. Hold your spouse’s hand or that of your child. Watch the Sunrise and Sunset. Do what you need to do to find a simple moment of joy. You might not have the gift of time, but you can make the most of the time that you have.

These are our suggestions on living with a terminal illness. We hope they are useful. Please get in touch at Dying to Understand
to share your frank views and comments. Together we believe that we can do dying better.

Living With a Terminal Illness: Community and Resources

future change rain on leaf

Our Resources

Don’t let dying be a plane crash disaster. Talking about dying has never killed anyone! If you or someone you know has an incurable illness, it is recommended to have discussions about the fear of dying early.

Looking for more information on the fear of dying? Stickman is an everyday guy who is here to help confront the issues of death and dying.

Dying To Understand is a not-for-profit Charity. Click Below for our Green Page Directory for more Death and Dying Resources.

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Read Our Blog

We all think about dying and illness differently. it is these varying thoughts and opinions that should be discussed, so we may negate the stigma around death. We think that dying has been ignored for too long and that dying should be a regular discussion point. Death is a certainty, so let’s talk about it.

We are happy to share our thoughts and opinions about life and death and some things in-between.

Finances of dying mountain climbing

Point of View

What are your thoughts on living with a terminal illness? A good debate is always fun. There are views and counter-views, arguments and discussions. This brings out all the flavours. We will start the conversation every week.

As a member, please join in and respectfully have your say. We welcome you and your point of view.

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Man giving a helping hand

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