Grief is Never a Disorder   

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It’s my day off work today and I’ve got time to myself, no appointments, no coffee stops with friends and nowhere to be but here, so with a mug of coffee in hand, I make my way out into the garden, and sit down in the sunshine. Must check my emails just in case, I say to myself, so pick up my phone to see what’s there. There’s one from a well-known travel review company telling me about the places I might wish to visit – I delete. There’s another from an airport car parking company offering me a 20% discount if I book with them in the coming 7 days – I delete. And then there’s the weekly newsletter from Mad in America, which, over the past 12 months, I’ve just glimpsed at or even ignored (sorry MIA), rather than read through thoroughly like I used to before Olly died. 

Today for a change though, I find myself scrolling through the article headings and not too far down the page there it is “The Grief Pill is Coming!”. It’s the title of a blog by Donna Shuurman (thank you Donna) writing about the new DSM diagnosis of “Prolonged Grief Disorder (PGD)”, the symptoms of which must be elevated at 6 months post-loss and must be associated with significant functional impairment in order for a person to meet criteria for PGD.  

What the ….? They’re at it again, I hear myself silently saying. 

As I slowly read the sentences and references to a study hypothesising that PGD is a disorder of addiction, I notice some uncomfortable but familiar sensations surging around and through my body, signifying that I’m feeling a mix of disbelief, despair and absolute outrage.   

One sentence in particular jumps out at me and grabs my attention so acutely, that it feels personal. 

“The primary gateway symptom for diagnosis is yearning; persistent longing, pining for, or preoccupation with the deceased…….in this way, patients with PGD continue to crave their loved ones after they have died, due to the positive reinforcement provided by their memories of the loved one” (Gang et. al 2021) 

It appears that the authors of the above study have already developed a screening tool to diagnose the disorder and my curiosity gets the better of me as I click on the link to take a look at it. I’ll just see what it says, I say to myself, but I end up printing the document and completing it. Ooh I’m pretty damned angry now, and for the first time in 12 months, I feel an intense desire to write; a desire to write a response and explain to these well-intentioned so-called experts just how I feel about their attempt to turn a highly distressing and excruciatingly painful human experience into something pathological; into a medical condition that they assert would benefit from medical treatment – and treatment in the case means, yes you’ve guessed it, a pill.  

Let me start with some of the screening tool questions. 

Q1: In the past month how often have I felt myself longing for or yearning for Olly? 

Me: EVERY SINGLE DAY 

Q2: In the past month how often have I had intense feelings of emotional pain, sorrow, or pangs of grief related to the lost relationship? 

Me: EVERY SINGLE DAY   

Q3: For questions 1 or 2 above, have I experienced either of these “symptoms” at least daily and after 6 months have elapsed since his death? 

Me: YES 

Q4: In the past month, how often have I tried to avoid reminders that Olly is gone? 

Me: EVERY SINGLE DAY 

Q5: In the past month how often have I felt stunned, shocked or dazed by my loss? 

Me: EVERY SINGLE DAY 

Q6: Do I feel confused about my role in life or feel like I don’t know who I am (ie. feeling that part of me has died)? 

Me: QUITE A BIT 

Q7: Have I had trouble accepting the loss? 

Me: OVERWHELMINGLY 

Q8: Has it been hard for me to trust others since my loss? 

Me: QUITE A BIT 

Q9: Do I feel bitter over my loss? 

Me: QUITE A BIT 

Q10: Do I feel that moving on (eg, making new friends, pursuing new interests) would be difficult for me now? 

Me: SOMEWHAT 

Q11: Do I feel emotionally numb since my loss? 

Me: QUITE A BIT 

Q12: Do I feel that life is unfulfilling, empty, or meaningless since my loss? 

Me: QUITE A BIT 

Q13: Have I experienced a significant reduction in social, occupational or other important areas of functioning (eg domestic responsibilities)? 

Me: YES 

Result: Prolonged Grief Disorder 

My interpretation of the result: My physically and emotionally healthy 24-year-old son, Olly, died suddenly and horrifically as the result of a tragic and freak accident on the 27th of April 2021. My answers to the above questions reflect my excruciatingly painful yet natural and understandable human response to the devastation and heartbreak that have followed in the wake of the traumatic, untimely, and senseless death of my beautiful and beloved son. 

During a ceremony to celebrate Olly’s life held a few weeks after his death, friends and family stood up and shared some of the magical and unique moments they’d shared with Olly. Although desperate to stand up and speak myself, I chose not to. Instead, I asked the celebrant guiding us through the ceremony to read out a letter I’d written to Olly. I’ve read that letter to him every single night since then and intend to do so for as long as I’m able. 

It seems that letters are a powerful and expressive mode for me to convey my innermost thoughts, feelings and actions and with that in mind, I’ve written the following letter to Holly G, Prigerson, Ph.D and Paul K. Maciejewski, Ph.D, the authors and co-authors of the above-mentioned screening tool and trial study. 

Dear Holly & Paul 

 Seriously? 

Addiction? 

You’re kidding me? 

I’m wondering if you’ve you ever experienced the death of a child, a partner, a spouse, or a friend? 

Have you lost touch with your humanity and with what it is to be human? 

I’d be interested to hear if you know what it is to feel love so deeply that it literally hurts?  

I can tell you in no uncertain terms, that I’m not disordered, and I most certainly am not addicted to grieving. And what’s more I’m even more certain that I don’t need or want a pill to help rid me of my memories of Olly nor to rid me of my yearning for, my craving for or my preoccupation with my beautiful son Olly, who died tragically and horrifically just 12 months ago at the tender age of 24. 

I thank you for your concern, but I really don’t need or want you to rid me of the memories I have of him, because they serve a very important purpose. They remind me each and every day of his cheeky grin and his bristly beard, of his humour and his irritating habit of leaving half-eaten apple cores between the sofa cushions. They remind me of the stinky smell in his bedroom, of his solid sense of self, of the way he held his vulnerability with dignity. They keep his kind and gentle nature and his unprecedented talent for all things musical alive in my mind. Those memories I have of him fill me with sadness yet at the same time they bring a smile to my face. They arouse a warm sense of contentment and pride in me. Sometimes they give me a sense of purpose. They help me to get out of bed each morning, to put one foot in front of the other. They remind me of what it is to feel love for another human being and feel that I am loved, and they remind me of what it is to be human. I’d even go so far as to say that they keep me living. 

You might label me as disordered, believe that I’m in denial, or that my apparent inability to accept his death is unhealthy. But believe me, it’s totally healthy and it’s unequivocally helpful for me. Don’t get me wrong, I’m under no illusion that he’s dead, that his heart no longer beats nor pumps blood through his veins like yours or mine, or that he’s no longer able to breathe in the air that surrounds us into his lungs. I’m painfully aware that I can no longer wrap my arms around his broad shoulders, squeeze him tightly and gently kiss his forehead as I did the very last time I saw him alive. 

How could I deny this, when, with my bare hands, I sprinkled his ashes onto the earth in the grounds of a natural burial park on the day of his 25th birthday and gave him back to the universe where he now belongs. You see, despite the absence of his presence, he is still very much alive, his spirit and his energy gusts around me and within me like the wind and he continues to walk alongside me wherever I go. He is with me as I  wander through the woodlands or along the riverbanks; he is with me when the sun sets and when I close my eyes at night; and he is with me when the sunrises and when I wake to face yet another day. 

He is, and always will be a part of me. Afterall, his life began within me, he heard my heart beating as he lay nestled in my belly, and I felt his tiny limbs pushing and kicking against the wall of my womb. I gave him life, I nurtured him and fed him, as an infant, as a toddler, as a child, as a teenager and as a young adult. I witnessed him as he grew in confidence and developed his own view on life and the universe. And as hard as it was, I stood back quietly as he began to spread his wings and make his own way in this world. 

You may be interested to know about my belief that I will never “get over” Olly’s death, nor do I want to, because to do that would mean to dishonour his life, his name, his spirit, his energy and the extraordinary legacy that he leaves behind and which continues to live on despite the absence of his physical presence. To “get over” his death would quite simply be an injustice to this unique and honourable young man. 

And finally, by all means put your efforts into researching the “science” behind grief, although I tend to think that it will be rather a waste of your time and money. I’d suggest that your time and money would be better spent in learning how to simply sit with another human being whose child, parent, sibling, partner, or friend has died. You may wish to further develop your inner resources so that you have the courage and strength to witness their often-unbearable pain, and while you’re at it, it might be helpful to look up Dr Dan Siegel’s concept of a person’s “window of tolerance”. By allowing a person to feel and work through their pain, rather than trying to numb them into oblivion with a pill, the mechanisms and safety of which, I’d suggest you know very little, you might find that you actually help someone learn how to live with the fact that their loved one has died instead of labelling them as disordered and telling them that they need to “get over” it. 

Thank you for taking the time to read my letter. 

With kindest wishes 

Sue Irwin        

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Sue is a self-employed gardener, enthusiastic linguist & a mum to 3 children. She experienced repeated & sadistic abuse in childhood and spent 18 years as a service user within the UK's mental health system. Sue now draws upon these experiences to support the training of mental health and social care students attending the University of Worcester. She has worked in peer support roles both in statutory and third sector organisations and is currently involved in a local peer-led support group for people withdrawing from psychiatric medications. Sue is also studying part-time for a Masters degree in Social & Therapeutic Horticulture at Coventry University

1 COMMENT

  1. Thank you Sue for this deeply moving and important post.
    “Grief from the loss of a child is not a process. It is a lifelong weight upon the soul”.
    These are the words of a California, bereaved mother; addressing the Committee of America’s House of Representatives hearing evidence on the Opioid Epidemic.
    (It is my understanding that these words are from the book: Empire of Pain by Patrick Radden Keefe).
    How could any psychotropic drug appropriately alleviate the (now pathologised), unrelenting intensity of such loss? I found this statement so powerful in describing the loss of a child, that I felt compelled to quote, and to carefully reference, in response to your: ‘Grief Is Never a Disorder’.