What I’ve learned about spirituality in healthcare: Part 4

What can I do about it?

Of all the topics in this series, this is probably the one I find most difficult to talk about.

In 2021, my youngest daughter Emily was diagnosed with a rare and aggressive brain tumour. For the following seven months, I became her full-time carer until she died at home in May 2022.

During that period, the healthcare system was focused, understandably, on physical care. There were appointments, treatments, medications and practical decisions that needed constant attention. These were urgent and important. 

Looking back, I can also see that there were emotional and spiritual needs sitting beneath the surface. Yet I found it surprisingly difficult to speak about them.

Partly, I did not have clear language for what I was experiencing. Partly, I felt unsure about needing support myself. I thought I needed to be strong for my family. Like many carers, I focused on everyone else’s needs before my own.

Over time, I have realised that one of the hardest parts of holistic care is even giving language to these needs.

That process often begins with self-reflection.

Before talking to anyone else, it can be helpful to pause and ask: What is happening for me and my family right now? What are we carrying? What do we need physically, emotionally and spiritually?

Sometimes writing these thoughts down can help bring clarity. It can also reveal needs that have been sitting quietly beneath the surface for some time.

The next step is honesty.

Many people hesitate to ask for support because they worry about being a burden or taking attention away from the person who is unwell.

Yet healthcare journeys affect everyone involved. Patients, carers and families all experience the emotional and spiritual impact of illness.

Acknowledging that reality is part of being human.

It is also important to recognise that these conversations may feel awkward.

Most of us have not been taught how to discuss spirituality, meaning, grief, fear or uncertainty. Health professionals may feel uncertain too. Finding the right support may take time and several conversations.

That does not mean the conversation is not worth having.

Sometimes a simple statement is enough to begin.

“I think I’m struggling.”

“I need someone to listen.”

“I don’t really know how to explain this, but something doesn’t feel right.”

These small moments of honesty can create space for deeper support.

In the previous article, I described spirituality as water and language as the glass that helps hold it. Sometimes we need to help build that container ourselves. We notice what is happening inside us, find words for our experience and invite trusted people into the conversation.

The conversation does not need to be perfect. It will probably be messy!

It only needs to begin.

“Sit with your doubt, your questions, your fear of the unknown, and do your best to be comfortable with them… Don’t compound your anxiety by being ashamed of it.” (p.163)

Smith, M. (2020). Keep Moving: Notes on Loss, Creativity, and Change. New York: One Signal.

Next up in this series: Recognising client spirituality

I’m Heather So, and my work centres around making space for spirituality in healthcare conversations. I offer workshops and training for health professionals, talks for people navigating a healthcare journey, and I am the author of The Suffering of a Child, now available for purchase.

Feel free to get in touch with me.