The hidden anxiety of anticipatory grief: living with fear

When we think about grief, we often associate it with what happens after someone dies. We understand the sadness, the sense of absence, and the process of adjusting to life without someone we love. But for many people, grief begins much earlier.

When someone we love receives a life-limiting diagnosis, becomes seriously unwell, or we recognise that their health, independence, or abilities are changing, we can begin to experience grief before the loss has happened. This is known as anticipatory grief.

In my work as a counsellor, I am increasingly seeing clients who are struggling not only with sadness, but with the intense anxiety that can accompany anticipatory grief. They often describe feeling as though they are living with a constant sense of uncertainty- waiting for something they know may happen, but not knowing when or how it will happen.

This can be an incredibly difficult place to exist: loving someone deeply while also carrying the fear of losing them.

The emotional impact of living with uncertainty

One of the most challenging aspects of anticipatory grief is that there is often no clear ending point. When someone is experiencing bereavement after a death, there is the painful reality of the loss to process. With anticipatory grief, people may find themselves repeatedly moving between hope and fear.

A loved one may have periods where they appear stable, followed by moments of deterioration or uncertainty. This can create an emotional rollercoaster where someone feels unable to fully relax because they are constantly waiting for the next change.

You may find yourself thinking:

• Is this the last time we will do this together?
• What will happen if their health suddenly gets worse?
• How will I cope when they are no longer here?
• Am I making the most of the time we have?

These thoughts are not a sign that someone isn't coping. They are often a reflection of how much someone cares and how difficult it is to live alongside something that cannot be controlled.

Why does anticipatory grief create anxiety?

Our minds naturally seek safety and certainty. When we are faced with an uncertain future, our brain may try to prepare us by imagining possible scenarios. This can be a protective response. In some ways, the mind is attempting to say: “If I think about this enough, maybe I can be ready.” However, this can become exhausting.

People experiencing anticipatory grief may find themselves repeatedly imagining difficult situations, planning for worst-case scenarios, or mentally rehearsing what life will be like after the loss. Although this can feel like preparation, it can also mean that someone is repeatedly experiencing pain in the present moment for something that has not yet happened. They may feel as though they are grieving in advance while also trying to continue with everyday life.

The feeling of being stuck between two worlds

A common experience for people facing anticipatory grief is feeling as though they are caught between the present and the future. Part of them wants to appreciate the time they still have with their loved one. They may want to make memories, enjoy conversations, and hold onto moments of connection. Another part of them is already anticipating what they will lose.

This can create conflicting emotions that feel difficult to make sense of:

• love and fear
• gratitude and sadness
• hope and dread
• connection and loneliness.

Many people feel guilty for experiencing these emotions, particularly when their loved one is still alive.

They may think:

• How can I be grieving when they are still here?
• Shouldn’t I be focusing on making the most of our time together?
• Does feeling sad mean I have given up hope?

The reality is that anticipatory grief is not about giving up hope. It is about acknowledging the reality of what is happening while continuing to love and connect with the person in front of you.

When anxiety begins to affect everyday life

For some people, the anxiety associated with anticipatory grief begins to affect their ability to function day-to-day.

They may notice:

• difficulty sleeping because their thoughts become louder at night;
• constantly checking on their loved one or worrying about changes in their condition;
• feeling unable to make plans because the future feels uncertain;
• struggling to concentrate at work or in other relationships;
• feeling emotionally exhausted from always being prepared for bad news;
• withdrawing from others because they feel nobody understands;
• experiencing physical symptoms of anxiety such as tension, restlessness, or a racing heart.

Some people describe feeling as though they are living in a state of waiting. Waiting for the next appointment. Waiting for results. Waiting for a decline. Waiting for a phone call. This ongoing uncertainty can be incredibly draining.

The pressure of being the strong one

Another theme I often see is the pressure people place on themselves to cope. Family members and carers may become focused on supporting everyone else while pushing their own emotions aside. They may feel they need to stay positive, be practical, or avoid burdening others. Over time, this can create feelings of loneliness and isolation.

Some people feel conflicted because they are struggling while knowing someone else is the one who is unwell. They may think: "I shouldn’t feel like this-they are the one going through it." But anticipatory grief affects more than the person receiving a diagnosis. It affects partners, children, parents, siblings and close friends too. The emotional impact of loving someone who is suffering can be significant.

The guilt of experiencing ordinary moments

Many people experiencing anticipatory grief talk about guilt. They may feel guilty when they laugh, enjoy themselves, or have moments where they forget what is happening. Others may feel guilty for feeling frustrated, tired, or overwhelmed. But love does not remove the need for rest, boundaries, or moments of normality.

Being able to experience joy does not mean someone matters less. Taking time for yourself does not mean you are abandoning someone you love. Often, creating moments of connection and normality can become some of the most meaningful parts of navigating an uncertain time.

How counselling can help with anticipatory grief and anxiety

Counselling cannot remove the uncertainty or change the reality of what someone is facing. However, it can provide a safe and supportive space to explore the emotions that come with it.

Therapeutic support can help people:

• make sense of complex emotions
• understand anxiety responses and feelings of fear
• explore guilt and self-expectations
• find ways to remain present while acknowledging uncertainty
• develop compassion towards themselves
• identify ways to care for themselves alongside caring for someone else.

Anticipatory grief is not something that needs to be fixed. It is a deeply human response to love, attachment and the possibility of loss.

You don't have to wait until the loss happens to seek support

Many people believe counselling is something to consider after bereavement. However, the emotional impact of anticipated loss can be profound. If you are struggling with fear about the future, feeling overwhelmed by uncertainty, or finding it difficult to be present because your mind is focused on what may happen, support is available.

You don't need to wait until someone is gone before acknowledging that you are already carrying something heavy. Sometimes the hardest grief to explain is the grief that begins before goodbye. 

If you are experiencing anxiety connected to a future loss, or you are finding it difficult to manage the emotional impact of someone you love becoming unwell, counselling can offer support and understanding.