top of page

NP-C Corner: Living with Loss

If we don’t learn how to talk about and process grief it could majorly impact our health and well-being.

I understand that talking about grief isn’t comfortable for everyone. Many people may skip over this article with a strong ‘NOPE!’ response. However, the truth is that everyone will sadly face loss one day.

There is no perfect grief guide for when this day comes, but there is information that can help people understand how to navigate grief, know what to expect and learn how to cope the best they can.

 That G word.

With almost any loss comes grief.

It’s a completely natural and necessary part of life. It can be defined as a strong yearning for what or who we have lost.

Unfortunately, the Niemann-Pick community aren’t strangers to grief. We grieve the lives of our kids, friends or family members – either the life they had or the life we thought they were going to have before the diagnosis.

Research suggests there aren't natural stages of grief, so everyone will vary in how they process this challenging state. There will be days that the feelings subside, and other days they come back in full swing. Some people describe it as waves of emotions that come unexpectedly or in response to reminders of the loss.

A public sculpture
The photo of the statue above helps to demonstrate the hollow feeling that can come with loss. Source: Melancholy, a public sculpture created by Albert Gyorgy

Despair, anxiety, anger, guilt, depression, and loss of enjoyment in normally joyful activities are just some of the common grief experiences. Initially, we may also lose our appetite which is normally just a short-term response to stress.

Overall, people can learn to cope more effectively with grief over time. Science suggests that with good management strategies, people will eventually adjust better to living with their loss.

Strategies might involve connecting with friends and family, trying to sleep well, exercising and eating healthy where possible. Talking to a psychologist or writing about your grief in a journal can also be beneficial.

Coping with grief is not about letting go. It’s about learning how to move forward with them keeping you company in your heart and memories.


Where it can get more challenging: complicated vs uncomplicated grief

Uncomplicated grief is when someone can transition through their grief and adjust to their new situation over time. Signs of this could be returning to old hobbies and a normal appetite.

Person receiving a hug
Source: Canva

On the other hand, complicated grief (also known as incomplete grief, occurring in about 10% of grieving individuals) is when someone can’t move forward over time. These individuals remain severely distressed and may continue to have intense emotions such as anger and bitterness or experience an extreme fear of loss. Physical health may also be affected, such as appetite not returning to normal or continual sleep loss.

There are various reasons why complicated grief may occur. Maybe the feeling was suppressed as it was too overwhelming, or you didn’t have time to feel it as you had to race to organise funerals and make other arrangements.

Don’t lose hope. If this feels like something you are experiencing, there is help.

There are multiple ways to address complicated grief. Using targeted therapies with a psychologist or grief support counsellor is just one option. Beyond Blue is also a great resource if you need immediate and anonymous support. See list at the bottom of this article for more support services and resources.

I understand that grief is overwhelming, messy, tear-filled and intense but it’s also necessary for us to come to terms with our loss. Coping with grief is not about forgetting or 'getting over it'. Coping allows us to resume living our lives the best we can whilst still loving who or what we have lost.

If you are currently experiencing loss, you are not alone. Don’t forget that the ANPDF community is here to provide peer support where possible.

Stay supportive and supported,



There are support services and information you may find helpful. The following links will take you away from our website:

  • Beyond Blue provides confidential counselling services 24 hours a day, 7 days a week.

  • Griefline provides telephone and online counselling services.

  • Head to Health is a digital mental health gateway for online and phone mental health services.

  • Lifeline is a national charity open to all Australians in personal crisis. They have 24 hour crisis support and suicide prevention services. You can also contact a counsellor.

  • MensLine Australia provides confidential counselling services 24 hours a day, 7 days a week.

  • Red nose grief and loss provides online and telephone services to support parents and their families after the death of a child

  • SANDS provides support for bereaved parents following pregnancy loss from miscarriage, stillbirth and newborn death.

  • Solace Australia provides support for people who have lost their partner.

  • The Compassionate Friends Australia - provides friendship and understanding to support bereaved parents, siblings and grandparents after the death of a child of any age.

  • Support Services Australia also offers financial help.

  • You can also contact a counsellor through organisations such as:

  • community health centres

  • the National Association for Loss and Grief.

33 views0 comments


Rated 0 out of 5 stars.
No ratings yet

Add a rating
bottom of page