Grief – the disenfranchised, the delayed and the complicated

I was going to start of this post by explaining that I have a bizarre, convoluted relationship with grief, but I realised that like many others, grief is not experienced in a neat, linear fashion. Grief is not kind to the soul. It is not organised or forgiving. Grief is cold. Grief is surprising, spontaneous, and callous.

When I was in first year, I realised that I would soon be losing the closeness of my best friend. Unfortunately for me, my best friend was a small, furry animal. I soon began to realise that people are unkind to the grief of animal lovers, distanced co-workers, and celebrity role models. It was only in fourth year, during a placement in palliative care, where I came across the term “disenfranchised grief”. This is a broad term; some use it where a person’s grief does not fit societal norms. Other people extend the term to mean grieving over something unrelated to death, like the loss of a friendship, or detachment from your childhood self. In fact, doctors, nurses, and other healthcare staff can also experience disenfranchised grief due to the loss of patient [1]

I shied away from the overwhelming experience of grief and threw myself back into my work. I didn’t need to think about what had happened. In fact, it didn’t happen. I was happy just pretending that everything was as it were those many months ago. I was proud; I had defeated the enemy of death which I had feared for many years. You see, if someone had asked me all those years ago what my greatest fear was – it would have been the death of my furry friend. But here I was, sitting at my desk, pretending like none of this had ever happened.

The next few months are confusing to me as I do not remember them clearly – and that can happen with grief, impaired memory over time. [2]. But suddenly, I started remembering. Six months down the line I recalled what it was like to come home to a friendly wagging tail. I remembered her soft scent and hairs left on my sofa. I remembered her sitting next to me in the car. I found myself reliving experiences I had previously pushed behind me. Waking up in the night, I would instinctively look downstairs to find her. Shadows that danced under the kitchen table looked like her gentle paws running against the ground, and I heard jingles of bells which mirrored those of her collar tag. I was scared, this new grief felt like I was being haunted by her ghost. I was embarrassed and would cry in private – I couldn’t admit that this grief was hitting me now, 6 months on from the death of my dog.

It took a year to realise that I was experiencing a delayed grief reaction. I hadn’t let myself

process and experiences what I needed to feel to move on in a heathy way. So grief came back, hard. Kubler-Ross’ model of grief is wonderful, in the sense that explains that a variety of emotions can be observed during the grieving process, but I too was under the illusion that this is a linear, stepwise process – and something that happens immediately. We are taught to recognise abnormal grief responses, such as prolonged grief, or severe visual hallucinations, but I think we tend to neglect the concept of delayed grief. I could argue that I was just experiencing the first step of the grieving process, denial, but at what point does this become an abnormal response?

When I heard about the “ball in the box” model of grief, I identified with it so significantly. The idea as follows: there is a box, and contained within that box there is a button and a ball. The ball is frantically bouncing around the box, and every time it hits the button, the pain in unbearable. Of course, because the ball is so big it hits the pain button every few seconds. It’s one big overwhelming amount of pain. Over time, the ball shrinks, the button is being hit less and less, but every time it touches the button, it still hurts just as much as before. We grow around grief (Los Tonkin model), but every time grief hits, it hits just as hard. I prefer these two models because it teaches our patients (and ourselves) that our experiences are personal and doesn’t overly focus on what the actual emotions are (which is different for everyone), but instead explains the process we will go through. Some people are even scared that they will stop grieving one day, because it means that the deceased person is no longer a significant part of their life. The ‘Ball in the Box’ and ‘Growing around grief’ models show that the person is still present and such an important part of their life, but we become adapted to the pain, and our lives grow around this event. We continue to live, with the person still within our hearts.

Grief is still stigmatised, and we are uncomfortable talking about death.

When we add in factors such as the bereavement being inappropriate (disenfranchised) or prolonged grief, we are constructing huge, intolerable barriers for ourselves and our patients. We need to talk more openly about grief, about dying and about our own experiences.

Ways you can help someone who is grieving:

Please remember that every individual person is different, and it is important to discuss these things with the person who is grieving – it may not be appropriate for them

- Offer to help with daily tasks (food, toiletries, clean clothes), little gift baskets of affection can be nice

- Sit with them, avoid the pressure to say something for a while, let them grieve

- Avoid phrases like “they’re in a better place” or “you have to stay strong/stay busy”

- They may want to speak about memories you have of the person, but respect their decision to say no

- Look after yourself – it’s ok to grieve too

If you have been affected by anything spoken about in this post, please consider reaching out. Here is a list of charities you may find appropriate:

At a Loss ataloss.org

Bereaved through Alcohol and Drugs (BEAD) beadproject.org.uk

Blue Cross (animals) bluecross.org.uk

Child Bereavement UK childbereavementuk.org 0800 028 8840

The Compassionate Friends (bereaved families after death of a child) 0345 123 2304 tcf.org.uk

Cruse Bereavement Care 0808 808 1677 cruse.org.uk

Dying Matters dyingmatters.org

The Good Grief Trust thegoodgrieftrust.org

Samaritans charity 116 123 samaritans.org

Sands (for those affected by the death of a baby) 0808 164 3332 sands.org.uk

Survivors of Bereavement by Suicide (SOBS) 0300 111 5065 uk-sobs.org.uk

Widowed and Young (WAY) widowedandyoung.org.uk

References:

1. Lathrop D. Disenfranchised grief and physician burnout. The Annals of Family Medicine. 2017 Jul 1;15(4):375-8.

2. Maccallum F, Bryant RA. Impaired autobiographical memory in complicated grief. Behaviour research and therapy. 2010 Apr 1;48(4):328-34.