Understanding grief
Grief is usually thought of as the response to the death of a loved one, but it is more than that. Grief is the natural human reaction to any major loss — whether of a person, a role, a relationship, or one’s health.
For people living with aspergillosis, grief often arises not only from bereavement but also from the daily reality of lost health, independence, and certainty about the future. This type of grief is sometimes overlooked by others, yet it is just as valid and just as painful.
Bereavement grief vs. health-related grief
Grieving a loved one
When a person we love dies, the grief process involves:
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Remembering and honouring the relationship.
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Finding ways to carry that memory forward through photos, anniversaries, stories, or rituals.
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Adjusting to life in their absence while keeping a continuing bond.
The work of bereavement grief is therefore about preserving connection to memory and integrating loss into our life story.
Grieving health
By contrast, grieving the loss of health is about adapting to change in the present and future:
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Our body no longer works as it once did.
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Activities and roles that defined us may no longer be possible.
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Identity and self-image shift as illness reshapes daily life.
The task here is not to “hold on” to a memory, but to rebuild life around a new reality. Patients often grieve the loss of their “old self” — the person who could climb stairs, walk long distances, work, or join in family activities without limitation.
👉 Put simply:
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Bereavement grief = finding ways to remember.
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Health-related grief = finding ways to adapt.
Why health loss grief is particularly difficult
For people with aspergillosis (and other long-term conditions), this grief is uniquely challenging because:
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The loss is ongoing – illness can fluctuate, relapse, or progress, so grief is re-triggered many times.
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It is invisible – others may not see how devastating the loss of health feels, which adds loneliness.
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It is about the self – we mourn not just someone else but the person we used to be.
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It holds uncertainty – unlike death, health loss sits in a space between grief and hope, as treatments may stabilise or improve things, but may not restore the past.
How to adapt and live with health-related grief
1. Recognise it for what it is
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Naming these feelings as grief helps reduce guilt and self-blame. You are not “weak” or “failing” — you are adjusting to a major life change.
2. Give space for feelings
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Sadness, anger, frustration, and even envy are normal. Suppressing them often prolongs the pain.
3. Use safe outlets
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Talk with others who understand — family, friends, support groups, or counsellors.
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Write in a journal, make art, or use rituals (like lighting a candle or planting a tree) to symbolise change.
4. Maintain connection and meaning
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Illness may limit old roles, but it does not erase identity. People often rediscover purpose through hobbies, creativity, peer support, or volunteering.
5. Focus on what’s possible now
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Set small, realistic goals — e.g. walking to the garden, preparing a simple meal, joining a call.
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Celebrate these achievements, rather than only comparing yourself to your old abilities.
6. Care for your body
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Sleep, nutrition, and gentle movement (as tolerated) improve energy and resilience.
7. Seek professional support if needed
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If grief leads to ongoing despair, anxiety, or hopelessness, ask your GP about counselling or NHS Talking Therapies. Support is available, and you don’t have to carry this alone.
Resources
UK-based
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NHS Talking Therapies – free counselling/CBT for anxiety and depression.
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MIND – support for mental health and loss.
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Asthma + Lung UK – helpline and groups for lung disease.
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Cruse Bereavement Support – guidance on grief that can apply to non-death losses.
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NAC CARES (aspergillosis.org) – patient meetings, forums, and tailored educational resources.
International / Online
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What’s Your Grief – blogs, courses, and podcasts on different types of grief.
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The Mighty – online community sharing experiences of chronic illness and loss.
Books
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How to Live Well with Chronic Pain and Illness – Toni Bernhard.
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When the Body Says No – Gabor Maté.
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On Grief and Grieving – Elisabeth Kübler-Ross & David Kessler.
Videos
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Grieving with a Chronic Illness (YouTube).
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Living with Loss: Navigating Grief in Chronic Illness (YouTube).
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Letting Go of Grief and Guilt with Chronic Illness (YouTube).
Final message for patients
Grief from health loss is real, human, and normal. It is not about weakness, nor about giving up. It is about learning how to live differently — with compassion for yourself, space for your feelings, and courage to rebuild purpose in new ways.
While bereavement grief holds on to memory, health grief asks us to adapt. Both are valid, both are painful, and both can soften with time, support, and self-kindness.
👉 You are not alone — others with aspergillosis and chronic illness are walking the same path, and support is out there to help you carry it. 💙
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