Vanessa's story*

"I have been a carer for my son, Jackson for the past eleven years. I fear he might not make it. Jackson was admitted to hospital for treatment three years ago. While there, he was sexually assaulted. Now, he struggles greatly with his condition. As his carer, I have been on a long, stressful, and distressing journey. It has been profoundly life changing and the impact is underestimated. It creates a state of constant anxiety.

The word "journey" is often overused today… but in the case of mental illness I consider it appropriate, as it captures the experience of my family member living with a mental illness over the last eleven years and that of my family travelling with him.

It can be bewildering, frightening, and offers no certainty regarding the destination. There are many bumps along the way, there’s derailments, and despite the little guidebooks, you simply have no idea where you’re going. Despite the many encounters with others, you develop few close companions. It’s lonely and isolating, filled with fear and uncertainty. You just have to keep going, you fall, and you pick yourself up again and again, and struggle on.

There is a grieving process associated with the painful loss one experiences in mental illness. I consider that grief is central to the experience of mental illness, both for the person living with mental illness and for family deeply affected as well.

For carers, grief is often invisible, experienced, and not named. It’s not publicly acknowledged, and it is poorly understood. It’s often dismissed. It has to put on hold while there are crises to be dealt with. It has no beginning, no end, comes in waves, and is always present. As a carer, you have no framework for these feelings, and you are offered no resolution. It’s complicated by the fact the lost person being grieved for, is present and in pain. Around mental health professionals, your grief must be hidden, otherwise, you risk being labelled and your grief used to discount your standing.

For families of people with mental illness the experience of loss and feelings of pain are profound and ongoing, as one observes their loved one struggling to live with a mental illness. When your loved one has a mental illness, they lose the simple enjoyment of life, a sense of fulfilment, a meaningful life, basic development milestones, reaching their full potential, and a loss of control of their own lives.

For carers, the loss can include the pain of the loss of the life you had before the disruption caused by mental illness. You lose the easy ordinary, lightness of life. You feel helpless, and despair at having no power to alleviate the suffering of the one you love. You feel anguish at seeing no place for your loved one in the world. And, you lose your family's privacy, by an intrusive health system.

Caring has impacted upon my mental health too. I have felt chronic sorrow. It’s entered my life, and led to accumulated layers of negative thoughts, and unhelpful patterns of behaviour including feeling helpless, bitter, frustrated, angry and isolated. My caring role has led me to feel fearful, hyper vigilant, anxious and despair.


* Names and places have been changed to protect individuals.

Share your story

Family and friends supporting someone with mental health issues can call Tandem’s Support & Referral Line on 1800 314 325