The first weeks after the diagnosis
The moment of diagnosis is a shock for all parents – whether they knew before or at birth, or only became suspicious after some time. You never forget the moment a doctor first says the diagnosis out loud. It marks the start of a journey into the unknown, which is frightening at first.
What will the future of my child and our family look like? Parents usually go through the 5 stages of grief after a diagnosis.
Based on the model of the Swiss-American psychiatrist Elisabeth Kübler-Ross, the 5 stages of grief look like this:
1. Denial
“This can't be.” A first protective reaction – what has happened seems unreal, the mind refuses to accept reality. The first stage is denial, in which grieving people feel horror or numbness. This stage can last from days to a few weeks.
2. Anger
“Why me of all people?” The emotion that breaks through is directed at fate, other people or oneself. Anger gives the pain a direction. In the second stage, many emotions are lived through – from sadness to anger, fear, restlessness and abandonment. Feelings of guilt also increase, and people try to find someone to blame.
3. Bargaining
“If only I… then maybe…” Here one searches mentally for ways out or compromises – with oneself, with fate or with “higher powers”.
4. Depression
“I can't bear this.” Reality sets in, and deep sadness, emptiness or withdrawal appear. This stage is often particularly painful – but also necessary.
5. Acceptance
“It's hard, but I'm finding a way to carry on.” In this stage, it becomes possible to integrate the loss and find new meaning in life.
How long each parent needs to process the new situation and to reassess the picture of the future they had already formed is different for everyone. Give yourself time and let your feelings run their course. Do research if it helps you, try to connect with others and seek psychological support if needed.
First of all: you are not alone, even if it may feel that way at first. There is no exact figure, but estimates suggest that around 5% of children in Austria live with a disability. That is 85,000 children. Statistics Austria is planning a pilot project to record this more accurately.
Read the story: Welcome to Holland – in German: Willkommen in Holland by Emily Perl Kingsley.
Help for yourself
Parent groups have now formed for many conditions and genetic defects. Search for them on social media if you wish. For many parents, “a glimpse into the future” and exchanging experiences with other parents is very helpful in coping better with fears and uncertainties. Also search using the English term – especially for rare syndromes, the chance of finding information is higher.
Also seek psychological help for yourself. Even a few sessions can help you reflect on the burden, fear and worry and strengthen you for the time ahead.
PsyOnline.at – Austria's largest internet portal for psychotherapy