Anticipatory grief

We often think of grief as the feeling we have after loss. ‘Anticipatory grief’ is the term used to describe the feelings associated with a loss before it actually happens.

The hardest part for me was accepting that T won’t do all the things I’d imagined a daughter I had would – get married, have children etc. I love her fiercely, but she won’t ‘grow up’ in that sense.

Anticipatory grief in the context of a rare condition may be about:

• the loss of the future you had imagined before receiving a diagnosis, or news of disease change
• how your body, appearance, or abilities might change
• life experiences that may no longer be possible
• changes to roles or relationships
• the loss of a loved one

My friends were talking about having kids. That’s much more complicated for me as I don’t know how that’s all going to go … my condition can be inherited. It made me feel different again. I felt pretty upset afterwards, wondering what I’ll do.

Understanding grief

We all experience grief in our own ways, about different things. It can be helpful to recognise that you might have very strong feelings about a particular loss, but someone else might be more upset about something very different.

The type of losses we feel most deeply are often very personal and unique to each of us. Sometimes, we can become very self-critical when we are experiencing grief, or believe we should not feel as strongly as we do.

I had always imagined I’d have a child who would be very active, into fitness like me. C just can’t do that all that, and it took a long time to feel it was ok to say I was upset about not being able to be type of Dad I thought I’d be

What can grief feel like?

‘Grief’ is not usually ‘one feeling’. It can include lots of different thoughts and feelings.

Sometimes, just when you thought you had come to terms with something, grief may surprise you again.

Grief can also feel very physical. You might feel pain or emptiness, stomach aches, changes to your appetite or sleep patterns, headaches, exhaustion or muscle and joint pain.

You might also feel relief, guilt, anger, sadness, longing, tearfulness, lack of appetite, exhaustion, irritability, longing, withdrawal, lonely, empty, hopeful, brain fog, blank or numb.

The stages of grief

“There are really only two stages of grief, … who you were before and who you are after.”  Ted Rynearson

Grieving is much more of an ‘experience’, than a neat step-by-step process. It can often feel much more messy and unpredictable than we would like.

There are, however, generally accepted to be certain experiences that grieving usually involves. Speaking Grief has resources and more information about these.

Growing around grief

It can be helpful to think about grief as something to both ‘make space’ for, even while everyday life continues alongside it.

Feelings of grief never completely go away.  Someone – or something – will always be missed. Even though it may feel hard to believe initially, the feelings of grief will feel less ‘big’ inside over time as you learn to live with the loss you have been through.

Over time, there will be more room for good memories and new experiences, and for the sadness to take up less room inside.

Think about ‘who helps’ – and how?

Talking to someone you trust can help you cope with changes practically. It can also help you work through difficult thoughts and feelings.

However, it can help to first spend some time thinking about ‘who is good for what’.

You may find that some people are more able to help either emotionally or practically.

• Emotionally by being a listening ear, someone to have a good cry (or shout) with etc.
• Practically by helping with childcare or dropping round a meal etc.

Try not to muddle up these two types of people as it can then be very disappointing and frustrating. People who are good at both are a great asset to your life!

If you need to make adjustments at work or with studies to help you cope with these more effectively, remember that you are legally entitled to ask for these. This is true whether you are a carer or an affected person.

Reaching out for support

Sometimes when we are struggling emotionally or very stressed, it can be hard not only to ‘think’, but also to reach out for help and advice.

The prompts below might help in thinking through what sort of help you might need:

• What is the most difficult thing causing me distress right now? Is it practical issues such as lack of mobility, symptoms, my emotions, my relationships?
• Who can I talk to for help that I am already in contact with? GP, rare disease doctor, social worker, rare condition organisation?
• Are there any related organisations or services where I can look up information? Support for parents, carers, money worries?
• Are there any friends, family members or advocacy supporters I could ask to help me find out more about what is available? Could they then help me contact them, or make contact on my behalf?