Leaflet: Thoughts and Feelings After Diagnosis

Parent’s common thoughts and feelings

When a child is given a diagnosis like this, the process of adjusting and accepting the news can be painful. It often involves a range of emotions, some of which you may not have experienced before. Your thoughts and feelings are likely to change over time – this is normal. The way you react depends on your previous experiences and your individual situation.

Shock, disbelief and denial

Example: ‘They’ve got it wrong’

If you feel nothing at first, don’t worry. Often shock, disbelief and denial are the first feelings parents have and can be a useful and normal way of coping. Psychologists think that this reaction is the way our minds slowly adjust to upsetting news so that it is processed at a more controllable pace.

Relief

Example: ‘At last we know what is wrong’

This reaction often arises when there has been difficulty reaching a diagnosis and this process has been drawn-out. Some parents feel the diagnosis has helped to ‘lift a weight’ and allow for something more positive to happen.

Guilt

Example: ‘What if I caused this?’

Many parents question if they to blame (e.g. a genetic risk). This is a natural reaction. It often comes from your sense of a responsibility to your child. Sadly this is an aspect of life you have not been able to control. Your love and parenting offer the best impact you can have on your child’s life from now on.

Sadness and loss

Example: ‘Our hopes and dreams are gone’

These feelings may arise when coming to terms with the diagnosis and the effect it will have on your lives. Often parents feel a sense of loss around the future they dreamed of for their child. Sometimes parents feel that life has lost meaning because they have less control over the future. These reactions will slowly feel more manageable as you rebuild the way you look at the future.

Helplessness or feeling out of control

Example: “What will go wrong next?” “I want to make this different”

Parents can feel that the direction they were headed in life has been altered off-course. They can feel helpless because there is nothing they can do to make their child better or because they feel they can no longer aim for the same goals in life.

Anger and frustration

Example: ‘Why wasn’t it picked up sooner?’

It is common and understandable to feel angry. Some find this feeling very unsettling and hardest to bear, especially if you are angry with your partner or the rest of your family or getting angry about seemingly small issues. Sudden bursts of anger can be a sign of the stress you are under. It may be a sign you are at the limit of what you can deal with emotionally at this specific time.

Scared

Example: ‘How will we cope?’

Parents often feel fearful about a range of things including the equipment needed, their role in caring for their child and the future. Often the fears subside as your understanding of what to expect increases.

Things you can do to help

• It is important to think about how to look after yourself, your child will need you more than ever right now. Be strict with yourself about taking rest and sleep.

• It can help to find an outlet for difficult feelings. Talking to someone can be helpful. Exercise can also be a good outlet for feelings such as anger.

• Remember that everyone copes differently. Give your partner/family time and space to adjust in their own way, even if those ways do not make sense to you.

• Ask for help and if it is going to help, accept it whenever and however it is offered.

• If you would like more information, pace yourself that you can absorb it at a steady pace.

• Be selective about what you read from the internet; not all sites offer reliable information. If necessary ask professionals where to look for more information.

Lifetime psychology service

It is normal to experience strong feelings following diagnosis and for this to go on for quite some time. Often parents say that difficult feelings reduce as time goes by. However, if you find that this is interfering with life or how you care for yourself or your children, a referral to the Lifetime Psychology service may be useful. Please ask your Lifetime Nurse for more details.

For more information: t: 0300 124 5300*

e: sirona.hello@nhs.net

w: www.sirona-cic.org.uk

Date of creation: April 2019
Date of review: April 2021
URN: 496