Living with

Diagnosis

It can be a shock to realise that medical treatment cannot cure all illness. You will have many questions about your diagnosis. Until the moment of death, you are living and there is much that can be done to maintain your quality of life or lifestyle because every day of your life is now more precious than ever.

The news that you have a life threatening illness brings many reactions. Shock, followed by fear, sadness, anger, worry, weariness and intense feelings of “Why me?” You may cry a lot and feel hopeless and severely depressed. Most people find great support and comfort in sharing their feelings and accepting help. 

It may be difficult to make sense of what is happening to you. There may be many questions you want to ask and you may not be able to find the words. Don’t be afraid to ask questions of your doctor or specialist. You might find it helpful to write down questions as they occur to you in between appointments with your doctor. It’s okay to ask as many questions as you need. Click here (PDF 76Kb) for a page you might use to write your questions and the answers you receive.

For more information on support available to people living with a life threatening illness and their carers, click here. For information on living with a life threatening illness, click here.

You may feel the need to find out everything you can about your diagnosis: how the illness will most likely progress, what treatment options are available, whether there are any possible cures. Seeking out further information on your own is an important process. Knowledge about what might happen and how to respond will also help you be more informed and give you a greater sense of control.

However, not all information is accurate and helpful. When looking for health information, the reliability and appropriateness of the information are always the most important things to consider. You should also share the information with your doctor or care team so they can work with you. 

I was under a lot of pressure from friends and family sending me information and stories about cures. I was losing confidence in my ability to decide what was best. Luckily, I could discuss this openly with my doctor.

Some things to consider when assessing sources of health information include:

• Who is providing the information?
• When was this information published? How up to date is it?
• Do you understand the information or is it full of medical jargon?
• Does this resource provide links to other reputable resources?
• Does this person or company have a commercial reason to promote a particular product?
• Does the resource discuss the risks as well as the benefits of a particular approach?

I spent endless hours on the internet each night searching for information, answers and miracles. It was exhausting, but it was one of the few things I could do to feel useful.

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