We are delighted to share a blog post from one of our very own volunteers, Sam Davies, about his experience of running our online bereavement support groups.

From Cancer to Coronavirus: How the world is crying out for support, and who is answering

Every day now for what seems to have been a lifetime length of 3 months, announcements have been made on the number of new cases, hospitalisations and deaths for the novel coronavirus (COVID-19) in the UK daily briefings. Noticing that merely reading these numbers comes across as cold and robotic, the politician chosen to front the briefings normally adds a small emotional caveat such as “behind each of these numbers is a family who’ve lost a loved one”, or “our thoughts and prayers are with the families and friends of those who’ve died”, before swiftly moving on to the daily updates as to the measures they are putting in place to try and stop the virus.

Whilst the emotional caveat is consistently used, one begins to wonder whether it is fully understood by the politician using it or the public hearing it, or whether the daily usage of such sentences mentioned previously has actually helped to normalize something which, despite being the inevitable ending of every life cycle, still remains one of the hardest things to confront and go through: death and loss.

Of course, death is inevitable, it is something we will all encounter multiple times in our own life before it is eventually the thing that takes each of us. For many though, the thought of death, loss and grief presents an uncomfortable challenge of dealing with life in a completely different way socially, emotionally and physically. This challenge often leads people to turn away from confronting these realities, instead repressing their thoughts and feelings, which can lead to prolonged and accentuated trauma for the individual. Despite the inevitability of death and loss, specialist bereavement support remains relatively minimal in the UK, and the conversation has yet to be had properly about how we educate children, adults and the elderly about the concepts of death and grief. This in turn, has led to generation after generation being left utterly bereft of adequate coping strategies and knowledge around the impact of death on families, friends, careers, social lives, finances, physical and mental health amongst many other other things.

Killing ONE IN FOUR people in the UK every year, Cancer remains one of the most common causes of death in the UK, and yet, despite first being mentioned in ancient Egyptian texts in 1600BC, and being widely referred to as a common cause of death for the last four hundred years, there is only ONE specialist cancer bereavement support charity in the UK: The Loss Foundation. This statement alone should be a call to action to any researcher, psychologist, therapist or policy maker to make a change in the way in which death, grief and bereavement support is approached in the UK and across the globe, never mind the fact that most grown adults still struggle to have a rational conversation about cancer, loss and the process of grief.

Founded in 2010 by Dr Erin Thompson, The Loss Foundation has been committed to providing free, open face to face group spaces for individuals who have lost a loved one to cancer. These face to face group sessions allow bereaved individuals to come and discuss their thoughts, feelings and whatever they feel is weighing heavy on their mind. In addition to the group sessions, the Foundation also offers therapy sessions and cancer bereavement retreats. Their taboo free spaces where all vibes are welcome and no discussion is irrelevant or discarded, have helped many hundreds of individuals to confront their grief and find companionship through friends and facilitators. Given its status as the UKs only specialist cancer bereavement support charity, it came as no surprise when The Loss Foundation also became the UKs only Coronavirus bereavement support charity.

How then, can Cancer bereavement support continue, and Coronavirus bereavement support begin, given the inability to hold the monthly in person group sessions The Loss Foundation have become so used to holding due to the lockdown restrictions? Simple, through the medium of the internet. Over a mammoth month of hard work, group meetings and trial runs, The Loss Foundation transitioned all of their support groups to operate remotely via platforms such as Zoom by April. With a provisional group size of 12 participants and 3 facilitators, I was anxious to see how the new way of facilitating groups would play out. Would there be internet problems? What would we do if someone was getting extremely emotional and we were unable to support them through the usual means of comforting? How could we ensure that every individual that attended the group would be able to have their chance to say what was on their mind? All of these questions, plus many more, were ones that I and my fellow facilitators, and the team at The Loss Foundation have constantly explored with each session, based on facilitator and participant feedback.

What has become increasingly apparent is that, despite the difficulty of lockdown and the additional level of surrealism that the pandemic has added to the way in which people are grieving, many common themes still remain as points of discussion in the online groups. Below I will lay out a few of these themes that commonly occur, how I personally feel they can be managed and how I feel the pandemic has impacted these themes. These are my thoughts and feelings and whilst I am a facilitator at The Loss Foundation these are merely reflections, not advice on their behalf.

“I don’t feel like I’m making any progress in my grief”

The process of grieving is a complex and individual one. One of the biggest misconceptions is that the process of grief follows a stage like model. This model is commonly known as “The 5 stages of Grief Model” proposed by Kübler-Ross and consists of Denial, Anger, Bargaining, Depression and Acceptance. Of course, all of these “Stages” contribute to the process of grief, but to say the grieving process follows a linear progression is unhelpful and leaves many individuals feeling like they are grieving incorrectly, or somehow not meeting some preset schedule of when they should be going through each stage.

A more helpful way of conceptualising the process of grief (and the one most favoured by The Loss Foundation) is the “Dual Process Model” proposed by Stroebe and Schut. This model considers grief to be less of a linear process, but instead a process of fluctuating between two common states of being Loss-orientated or Restoration-orientated. This model is considered far more helpful in getting to grips with grief, as instead of expecting individuals to follow generic stages, the focus is more around helping to understand how individuals can fluctuate between the two states mentioned above over many years. Whilst this removes the hope that the process of grief will ever be “over”, it does provide validation to those who still suffer the pain of loss several years after the actual loss occurred.

This way of approaching grief has become increasingly important during lockdown, as many participants attending the online sessions have mentioned a renewed sense of grief and loneliness during the period of physical isolation, despite having lost their loved one many years before. My advice to anyone reading this that is going through loss is to check out the model and forgive yourself for not meeting the unrealistic targets of ending your grief after 5 stages, and for revisiting areas of grief even after you thought you were done with them.

“I’m struggling with my mental health for the first time in a long time/ever”

Depression, anxiety and many other common mental health issues are of course very common traits of grief and trauma, but it has become increasingly apparent that these issues have been blown enormously out of proportion during the period of lockdown. For many people, lockdown has been the first time they have ever experienced mental health issues such as anxiety and depression. For others who may have lost a loved one some years ago and experienced mental health issues during their initial period of grief, lockdown has been the first time in years that they have felt these feelings of panic, worry or sadness to this degree.

Speaking as someone who suffers regularly from panic attacks and has seen their own mental health deteriorate during lockdown, I wanted to share some easy self-help strategies I, and many others I know, use regularly.

First: Stop trying to rationalise the irrational. Reflection is a wonderful thing when done properly, but can have dire consequences when left to spiral unchecked. Anxiety by definition is the irrational fear of perfectly rational things. These things don’t always have to consciously worry you, and can often be things that you were previously never worried about. Stop trying to wonder why these things now worry you, this is not an important thing to do right now. Focus on ensuring you are physically safe and try to find things that will help you to calm down should you experience a panic attack. The easiest method of calming yourself during a panic attack is through the use of simple breathing techniques, such as the one below.

Second: Only reflect if you feel capable of doing so and only allow yourself to reflect for short periods of time to start with (eg 5 minutes). We are a very solution driven society, so it can be frustrating to be feeling depressed or anxious and to not know how to “solve” those feelings. Often this frustration leads us to delve into our past to try and logically think back to when the episode of depression or anxiety began. This process of reflection can be mentally dangerous, especially if you are already in a vulnerable position. Mental health workers and clinicians spend years learning how to reflect in a positive and constructive way, and still many struggle to avoid feeling anxious or depressed when looking into their past. Some helpful ways I’ve found to reflect are as follows: Write down one broad thought as a question, such a “how long have I felt like this”, start a timer and allow yourself 1 minute to think of an answer and write it below. Once the minute is up, put the paper that the question is written on in a place away from sight. Do this for a maximum of 5 questions and then go to do a distracting activity, such as watching TV, reading, cooking or spending time outdoors. This short burst of reflection should put your need to find answers as to why you are feeling the way you are to bed at least for the day, and will allow you to reflect without tumbling off a cliff and getting lost in endless anxiety/depression inducing reflective thoughts.

Refer back to the breathing techniques mentioned above, and as always, if you notice that your are struggling and need help, use the Samaritans hotline on 116 123

“I feel guilty”

The word guilty has been possibly one of the most frequently occuring words i’ve heard whilst facilitating sessions at the loss foundation since joining them in January. There are many reasons why people feel guilty, many of which often appear to be seen as logical reasons to feel guilty on the surface, until the deeper meaning is unearthed.

One of the most common reasons people seem to feel guilty is as a result of them wishing that the people they come into contact with were also experiencing their grief. On the surface, this seems a sinister and anger driven feeling that is “wrong” because it is wishing ill on others. But when you delve further into why individuals who are grieving so often wish their grief on others the reasons quickly become ones of desperation and a lack of understanding from their peers.

When trying to console individuals who have lost a loved one, many stock phrases such as “I can’t imagine what you’re going through” or in some cases as mentioned above “your in my thoughts and prayers” are commonly used. Whilst these are well intentioned offerings, the delivery can often result in feelings of further upset as bereaved individuals try to project their feelings onto you so you truly can feel how they’re feeling, or they try to process how thoughts and prayers will help them through the pain of loss. The fact is, in this instance, no one is to blame. The individual offering help is merely doing their best given the limited level of wider general knowledge that most people have around death and grief, and the bereaved individual is trying to process something they are not equipped to process in a world not designed to help them.

In these instances of guilt there is one thing I have heard my fellow facilitators say repeatedly, be kind to yourself and to others around you. Your guilt comes from your decency as an individual and the knowledge that had you not been in the surreal circumstances of going through grief, you wouldn’t wish ill on anyone. Therefore, try to find spaces where you can express these natural feelings and thoughts, whereby you wont risk hurting the feelings of those trying their best to help you, but importantly wont hurt yourself by not allowing yourself to think very natural and acceptable thoughts.

And to anyone reading this who is trying to support someone through the process of grief, sometimes not saying anything says a thousand words. To be frank, there are no words or stock phrases that will ever come close to bringing someone back from the dead or properly consoling those who have suffered a loss, all we can do is try to be there to listen and support where we can. Always try not to judge and try to remain neutral in your use of language, often people who are grieving just need a platform to share their opinions and feelings in order to help them process them without fear of judgement or upset. As always, if you notice someone you are supporting is struggling, call Samaritans on 116 123

Whilst there are many different topics that have arisen over the last 4 sessions and 1 walk that I have helped to facilitate, I feel that I could write forever about my experiences and I’m very aware that this is already a mammoth reading task.

What I would like to highlight is that, despite this being a period of physical isolation, the need for social connection has never been greater. I am extremely grateful to be a tiny part of such a fantastic organisation as The Loss Foundation, and I have been overwhelmed as the enormous need for free, high quality and frequent bereavement support services has become apparent to me since joining the foundation in January. Whilst the numbers of COVID-19 deaths may be slowly decreasing day by day, the loss, grief and trauma experienced by those who have lost a loved one will never truly diminish, only possibly change shape over time. It is also important that whilst The Loss Foundation champions bereavement support for Coronavirus, it is also vital that the Foundation remains a constant for those who have lost a loved one to cancer, something I am confident will be the case over the coming months and years.

There is still so much to be said and done to increase the support for all these individuals I have mentioned above, but I feel assured that through the work of charities such as The Loss Foundation, and their contribution to research and the wider understanding of loss, progress will be made.