Uncertainty, change & loss

There are lots of different aspects to living with the impact of a rare condition that may involve managing uncertainty, change or loss.

Not all of the pages in this section may be relevant to your own unique experience, or what you are coping with as an individual right now. Some sections may not speak to your own (or current) experience, such as those on dying or bereavement. You can always visit these at another point should you need to.

Uncertainty

The challenge of uncertainty, managing anticipatory grief and anxiety

Change & loss

Types of change and loss, grieving the changes, recovering from trauma

Grief

Acknowledging loss, growing around grief, reaching out to support

Talking about dying

Conversations about dying, practical matters and making memories

Bereavement

Grief after a bereavement, secondary loss, how to cope and when to seek help.

Section Guide

9

Diagnosis

9

Uncertainty, change and loss

9

Relationships

9

You and your feelings

9

Coping with pain

9

Fatigue, tiredness & exhaustion

9

Navigating healthcare

9

Sources of support