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What is Grief?
Grief is a natural response to loss – whether it is the loss of a loved one, a pet, a job, or a relationship. For individuals and families affected by Huntington’s disease, grief may also be felt at various stages, from the diagnosis of a family member to the time of genetic testing, and as symptoms of the disease progress.
The uncertainty and progressive nature of Huntington’s disease often bring waves of grief at different times. It is essential to acknowledge when you are grieving and allow yourself to experience those emotions. Suppressing grief can lead to emotional and physical reactions that may affect your thoughts, beliefs, health, and relationships. Grief can also resurface long after a loved one has passed, particularly for carers who may have experienced feelings of loss long before the actual death of their loved one. This is common in the Huntington’s disease community, where loss often feels ongoing.
Grief can manifest under different types of symptoms as mentioned below. It is important to recognise these symptoms, and by reading this page you are already one step ahead. While everyone grieves in their own way, it is important to seek support from friends, family, or someone you trust.
Social Symptoms
- Withdrawing from friends and family
- Avoiding social interactions
- Changes in faith or beliefs about the world
- Obsessing over what was lost
- Feeling disconnected from others
Physical Symptoms
- Changes in appetite
- Experiencing physical pain
- Racing heart
- Nausea
- Sleeplessness
- Difficulty concentrating
- Fatigue
Emotional Symptoms
- Confusion
- Rage
- Relief
- Helplessness
- Despair
- Denial
- Guilt
- Anxiety
Dealing with Grief
Practical Tips:
- Stay grounded: Engage in calming activities like journaling, hobbies, or staying connected with loved ones.
- Talk to others: Share your feelings with trusted friends, family, or a support group.
- Seek professional guidance: A grief counsellor or therapist can help you navigate complex emotions.
- Join a support group: Connecting with others who are grieving can provide comfort and shared understanding.
- Explore creative outlets: Writing, painting, or other forms of artistic expression can help you process grief.
- Stay active: Physical exercise or spending time in nature can offer relief.
- Try new hobbies: When you are ready, exploring new activities can provide a gentle distraction.
Emotional Support:
- Seek help: If you are struggling with grief, consider reaching out to counsellors, support groups, or mental health professionals who specialise in grief and chronic illness.
- Allow your emotions: Do not suppress your feelings. It is okay to experience sadness, anger, or even numbness.
- Express yourself: Whether through talking, crying, journaling, or other forms of expression, let your feelings out in a way that feels natural to you.
Self-Care:
- Adapt to change: Grieving is about learning to live with loss, not “getting over” it. You will develop new routines and habits over time.
- Care for your body: Grief takes a physical toll. Eat well, sleep enough, and engage in gentle physical activities to ease emotional stress.
- Set small goals: Focus on manageable tasks, like taking a short walk or completing a simple activity.
- Rest when needed: Grief can be exhausting. Give yourself permission to take breaks.
- Find small joys: Over time, allow yourself to feel moments of happiness without guilt.
- Reintroduce comfort activities: Gradually return to hobbies or activities that once brought you joy.
Understand Grief:
- Grief is not linear: You will have good and bad days, and that is okay.
- Heal at your own pace: There is no set timeline for grief. Everyone’s journey is unique.
- Accept all emotions: It is normal to feel a wide range of emotions, from sadness to confusion, or even relief.
- Let others support you: Whether it is through practical help, like meals or daily tasks, or simply their presence, allow loved ones to assist you during this time.
Click the image to purchase a copy!
Good Mourning: A Support-Group-in-a-Book for Navigating Grief
Good Mourning is a heartfelt and compassionate guide to navigating grief and loss. Written by Sally Douglas and Imogen Carn, founders of the Good Mourning podcast, the book combines warmth, humor, and raw honesty to remind readers they are never alone when dealing with grief.
Sally and Imogen created Good Mourning after experiencing their own profound losses, using their personal stories and shared understanding to connect with others. Through their book and podcast, they explore the many ways grief can impact our lives, from exhaustion to moments of ugly crying, offering practical insights and relatable comfort.
We had the privilege of interviewing Sally and Imogen to discuss their experiences with grief, the inspiration behind Good Mourning, and their mission to support others through life’s toughest moments. Their insights shine a light on the power of connection and the importance of normalising conversations about loss.
Read more about our interview with Sally and Imogen [here].
There is no ‘right’ or ‘wrong’ way to grieve, as everyone’s journey through grief is unique. While time may never fully heal the wound of grief, we encourage you to take small steps forward using the resources provided on this page, cherishing your loved one’s life, and caring for your mind and body in ways that feel right for you.
This page has been prepared in collaboration with:
Ji-Shen Loong
Griefline Board Member and Postdoctoral Researcher at Monash University
For Huntington’s disease-specific grief and loss support, you are welcome to contact Ji-Shen directly at ji.loong@monash.edu.
Griefline: Free grief counselling support
📞 1300 845 745 or Request a call back
🕗 8:00 AM to 8:00 PM (7 days, AEST)
Interested in participating in Ji-Shen’s study? Click here for more information.