When thinking about grief, we often focus on a past event. But the anticipatory grief that clients bring to therapy is often about an ongoing situation which has no clear resolution.
Recently I interviewed psychotherapist and genetic counsellor, Uruj Anjum, about the emotional impact of genetic diagnoses on individuals, couples and families.
One of the themes that emerged from our conversation was anticipatory grief and how it often sits beneath the surface of what clients bring to therapy.
In the conversation we also explored other aspects of genetic diagnosis, including ambiguous loss, the impact of attachment styles, carrier guilt and uncertainty.
To listen to the full conversation with Uruj, please access the podcast episode here:
If you would like to subscribe to the podcast, click here.
What is Anticipatory Grief
Anticipatory grief is when the loss has not yet happened.
Examples include:
- when someone is facing a life limiting illness
- when caring for a loved one who has deteriorating health
- living with the uncertainty of what the future holds
It’s a complicated experience because it can also contain hope. There can be hope for a different outcome while also grieving the expected future.
Anticipatory Grief and Genetic Diagnosis
Before becoming a psychotherapist, Uruj worked in the NHS for a number of years supporting individuals and families navigating genetic testing, inherited conditions and life changing diagnoses.
I’d imagined that genetic testing would give people answers. But Uruj explained that many families spend years waiting for information. Diagnosis often relies on whether symptoms appear and this waiting time is full of grief.
This grieving can include the loss of:
- Your imagined future
- Your perfect child
- A sense of safety and a predictable world
- Your identity
- Relationships
It may also be accompanied by guilt and fear.
How Anticipatory Grief May Show Up in Therapy
Clients may present with a variety of issues such as anxiety, difficulty making decisions or overthinking. They may be feeling stuck or be having relationship difficulties.
They’re unlikely to present with “anticipatory grief” but uncertainty about the future may well be beneath the surface.
Holding Uncertainty in the Therapy Room
Uruj said:
“A genetic diagnosis isn’t just medical. It’s relational. It changes relationships, identity and how people imagine the future”
Clients are learning to live with uncertainty, both in themselves and in relationships. As Uruj says, working with these clients is about how to hold uncertainty.
And many of our clients may be living with uncertainty too.
They may be waiting for medical results, navigating relationship difficulties, questioning major life decisions or facing an unknown future.
There are no answers.
As therapists, we help clients make sense of their experience and explore the emotions that are coming up for them. They may find ways to live alongside uncertainty without becoming overwhelmed by it – but grief may be a part of that.
As therapists, we don’t need to have the answers. But we can create the space where uncertainty, fear, hope and grief can all be explored safely.
Thinking About Your Own Specialism?
Uruj’s direction in private practice emerged after we’d discussed her experience together. Rather than leaving that knowledge behind, she found a way to weave it into the work that she does today.
If you’re thinking about your own niche, it might be worth reflecting on the experiences, interest and knowledge that make you stand out. Sometimes the things about ourselves that we take for granted can become the foundation of a specialism.
If you’d like help exploring your niche and communicating it more clearly to potential clients, please see my training here.
Frequently Asked Questions
What is anticipatory grief?
Anticipatory grief is grief that occurs before a loss has happened. It can arise when someone is facing a life-limiting illness, caring for a loved one with deteriorating health or living with uncertainty about the future. It often involves grieving what may happen while still hoping for a different outcome.
How is anticipatory grief different from bereavement?
Bereavement follows a loss that has already occurred. Anticipatory grief happens before a loss and is often accompanied by uncertainty, hope and difficult decisions. The two experiences can share many emotions, including sadness, fear, anger and anxiety.
What is the link between genetic diagnosis and anticipatory grief?
A genetic diagnosis can bring uncertainty about health, family relationships and the future. Individuals and families may grieve the life they expected, worry about future generations or struggle with difficult decisions around testing and treatment. This can create a form of anticipatory grief even when no loss has yet occurred.
How might anticipatory grief show up in therapy?
Clients rarely present saying they are experiencing anticipatory grief. Instead, they may bring anxiety, overthinking, relationship difficulties, low mood, feelings of being stuck or a strong need for certainty. Exploring what they may be grieving beneath the surface can sometimes be helpful.
What is ambiguous loss?
Ambiguous loss describes a loss that is unclear or lacks closure. Examples might include living with uncertainty about a diagnosis, changes in a loved one’s health or grieving a future that no longer feels certain. Ambiguous loss often overlaps with anticipatory grief.
Do therapists need specialist knowledge of genetic conditions?
Not necessarily. While understanding the basics can be helpful, therapists do not need to become genetic experts. Often the most important work involves helping clients process uncertainty, grief, identity changes and the impact on relationships.
Why are relationships affected by genetic diagnoses?
Genetic diagnoses rarely affect just one person. They can influence partners, parents, children, siblings and future generations. People may experience grief differently, make different decisions or struggle with feelings of guilt, fear and responsibility, all of which can affect relationships.
Can anticipatory grief occur outside of medical situations?
Yes. Anticipatory grief can arise whenever someone is facing a significant potential loss or an uncertain future. It may occur during relationship breakdown, major life transitions, fertility difficulties, redundancy or other situations where a person is grieving what they expected life to look like.