I read a Guardian article which made me cross, well not the article but the topic. It is about something termed, ‘prolonged grief,’ the article is here: https://www.theguardian.com/society/2022/jun/16/prolonged-grief-disorder-diagnosis-us.

The DSM is the Diagnostic Statistical Manual which categorises mental health disorders in the US, it is very influential in the UK, anyway now the disorder, ‘prolonged grief’ has been added. The article does discuss some general scepticism about the DSM (rightly in my opinion). I have some additional concerns to add to this list like that the process of adding ‘disorders’ to the DSM is a notoriously unscientific process, a lack of empirical evidence for the existence of some of these disorders and that the number of mental health disorders has grown significantly in recent decades. Personally, although some structure and guiding principles are useful, I think people should be treated as individuals and mental distress should be responded to appropriately. Instead, we have unfortunately designed a system whereby people often need to receive a label before they can receive support. This isn’t a criticism of individual, highly trained and well-intentioned psychologists but it does highlight the need for professionals to engage with research, remain critical and be open to learning from those who they support. Grief is not a mental illness, it is not something to be cured, it is a normal reaction to a tragic situation, it is the other side of love , it is subjective an individual.

The idea of categorising grief as a mental disorder is misguided at best and dangerous at worst. In the article a key supporter of the ‘prolonged grief,’ label is someone who has been studying it for decades…. well you wouldn’t want decades of work written off as a waste of time would you! She is a Professor of Geriatrics and claims she knows about grief because sadly her mum died last year.

I can’t say I know what losing a parent feels like, I can only imagine it is horrendous. The Professor has made a major oversight though, most of us, sadly will at some point experience the death of our parents. For me, I hope I do (not any time soon!) but I love them too much for it to be the other way round and for them to outlive me. We are not supposed to outlive our children, it is against the natural order of things. It shouldn’t happen this way. This is why child bereavement is so unique, it isn’t something many people experience and it isn’t something which can be theorised in the same way as any other grief. It is a unique type of grief which should be understood differently and probably not by a Professor of Geriatrics.

I would also suggest that a baby dying is even more unique because there are so few shared memories. Lenny died unexpectedly right at the end of labour, we now know it was due to a cord accident but when he was born, medics thought he needed a bit of help but no one thought he would die, so we didn’t plan for anyone to be at the hospital with us to meet him. My immediate family had COVID-19 and so only Roy and I and the amazing hospital staff met Lenny. It is so important for bereaved parents for their child to be remembered but without shared memories this is difficult – this was the inspiration behind this website. Now you might think, well yeah it is different but the article didn’t refer to child bereavement. True, but some people do apply these principles to child bereavement.

I was recently asked to provide feedback on the use of the, ‘Perinatal Grief Scale,’ (if you are interested google it, it is freely available) and its potential use as a tool for referrals to a Psychology service. Obviously, me being me, I didn’t just look at the scale, I looked at its origin, how it is scored and the empirical evidence which supports it. I read the original article from 1989, I won’t bore you with the details but it used a statistical method called factor analysis on a sample which was far too small for it to be reliable or valid. I couldn’t find much research further validating the scale and our conceptions of grief have changed significantly since the 80s. Put simply – from a research point of view it is bullshit. Many other scales such as those used to measure depression or anxiety can be criticised for being crude and certainly have their flaws but they have at least been well validated over a number of years with huge samples. From a personal point of view, before even reading the ‘research’ behind the perinatal grief scale , I was horrified- who wouldn’t feel those things!! (NB FYI the scale includes things like, ‘I cry when I think about the baby). I was honest in my feedback and suggested if they used it they would end up referring everyone!

So there seems a strange dichotomy – it is generally accepted in our society that parents would enter burning buildings for their kids but simultaneously if you feel sad that your child has died after an arbitrary time period we will pathologise the hell out of it based on some half arsed research from the 80s. I think the only thing we need to pathologise is our pathologically insensitive society that is terrible at dealing with other peoples’ pain. Our GP and wonderful bereavement midwife have had the same line with us since day 1 they are very clear that we feel shit because we have experienced the worst kind of shit that life can throw at you. Watching your perfectly healthy child die due to a tragic accident has to be up there in the list of shit things that can happen to a person. They both maintain that it would be concerning if we didn’t feel awful.

Sadly, I don’t think that all professionals who come into contact with bereaved parents share this view. I have read on numerous forums that women have been prescribed anti-depressants and anti-anxiety medications in the immediate aftermath of their loss – especially in the US this appears to be the norm. I am not a doctor and perhaps in some cases it is appropriate but this shouldn’t be the standard. It feeds into this Western view that grief is something to be covered up and ‘treated’ so we can all get back to work like good little capitalists. In other cultures, there are rituals and practices surrounding grief, where expression is encouraged and people are expected to take time away from other activities to work through grief.

We have felt the effects of our pathologically shit at grief society at times. I don’t blame well meaning family, friends and colleagues but I do blame the state of our emotionally inept society. I have run out of ways to explain to parents with young children who seem confused that we are, ‘still not ok’ after our child died. Spoiler – we will never be ok. Never. We might smile, laugh, have moments of joy again and maybe in time our lives will have some sort of contentment but we are forever changed and we will never accept that Lenny died. Some people have said they were hesitant to get in touch as they don’t want to ‘remind us’ of our loss – funnily enough when you have a child, you don’t forget about them, especially if they die. We think about Lenny every second of every day and to be clear we don’t want to and will never forget about him. Thinking about him isn’t all sad and painful – some days it is but more often it is full of love and pride that he existed. Some people have wanted to distract us from our grief but nothing could distract us and nor in even our deepest pain would we want to be – Lenny deserves to be missed. Occasionally people have reminded us we are ‘still parents,’ ooooh thanks for the membership to your elite club – I know I am a mum and Roy knows he is a dad but our child died and it feels different. Again, I don’t blame people, people don’t know what to say and they don’t know that the most powerful thing isn’t to say anything but to hold someone’s hand in their pain.

There really is no timescale for grief. It is love with nowhere to go and we will continue to grieve for Lenny as long as other parents continue to love their children (ie forever). Surely then we can’t pathologise parents’ love for their children and start giving them labels if they love their kids too much!? We could have ten more children and we would still grieve Lenny and our family would not be complete because Lenny died. I do believe in time it will change. I do think the most relatable theory of grief for me is Lois Tonkin’s which describes how grief stays the same size and just as present but over time your life grows around your grief but sometimes you can be taken right back to day 0. I think somehow we will integrate Lenny’s death into our life but there will also be times when we are transported back to December 2021 into the depths of despair – it just is not linear. I don’t think we will go back to normal, I don’t think we will ‘move on,’ and I absolutely don’t think we will ‘come to terms with it’ or ‘accept it.’ Lenny’s death has been universe altering, we are forever changed but in a way that isn’t all bad.

We are fortunate enough to have an incredible support network – people who have accepted us as we are and haven’t tried to ‘silver line’ Lenny’s death, ‘cheer us up,’ or ignore it but instead have been brave enough to sit with us in our pain. It is those people who will reap the benefits of having fulfilling relationships with the new Mim and Roy as we slowly emerge from the ashes. We are not ‘still parents’ we are Lenny Roshan Prestwich’s parents – a title I will gladly wear, unlike ‘prolonged grief’ which I totally reject for child bereavement. This title describes how we brought the most perfect little boy into the world, it is shorthand for us being courageous, determined, loving survivors and all round badasses!.