Furor Sanandi

Furor Sanandi… the passion, the fury or frenzy to heal.
The Diagnostic Statistic Manual (DSM) has introduced the diagnosis of Prolonged Grief Disorder (PGD) and it is full of it.

The premise is that if grievers are not ‘over it’ or ‘better’ in a year (6 months for children) they are mentally ill. Great!
The criteria offers no bright line for how the loved one died nor for who that loved one was.
The focus is simply on the date of the death.

Oh! and guess what?… they have a pharmaceutical waiting to ‘heal’ us.
Naltrexone is the drug.

Used widely in addiction treatment, Naltrexone is there to sever the connection between those that grieve and their lost loved one.
What could possibly go wrong?

Firstly, the thought of losing my connection with Luke is the primary source of my constant terror.
Yes, it brings huge sadness but it also brings great joy.

Secondly, Naltrexone can not differentiate between the living and the dead.
So, what happens to my connection with George, my Mum, my sister, music, my beloved pup?

Despite their pronouncements and diagnosis, the establishment knows they have it all wrong.
In June, Substance Abuse and Mental Health Services (SAMSHA) and the Agency for Healthcare Research and Quality (AHRQ), convened their panel of grief ‘experts’ in DC to focus on improving the quality of bereavement care.
The sprawling website is full of words that mean nothing except that in seeking how to do better, everything is inconclusive because… they are ignoring the actual data and asking the wrong fucking questions as they march the ‘healing’ path.
In short… they are barking up the wrong tree.
The healing tree.

Our grief illiterate society is rife with Furor Sanandi.
I understand that it is hard to witness this deep sorrow but please,
do not shame us,
do not stigmatize us,
because we are so sad…
we suffer enough already.

Is it really US that needs to be changed?
Or is it the attitude towards US that needs a rethink?

This pathologizing of grief has huge repercussions for many.
It affects custody battles, security clearances and professional license applications.

And as if this opioid crisis hasn’t fucked us enough..

Data shows that loss of a child to overdose rates the highest at 59% for receiving a PGD diagnosis.
Are they planning to medicate the entire grief epidemic that rides in the wake of the 100s of thousands killed every year? And what is the blow back of doing that?
Think about the water table contamination alone!
Think about the $$$, a voice whispers in my head.

In their wisdom SAMSHA and AHRQ open a portal seeking comment and feedback on their quest to improve bereavement care.

Well, they asked!
And so, I rally the troops… therapists, grieving Mothers, doctors…we all submit with strong, clear, well-informed voices.

Without prompt, our submissions are identical.
If we were still at school we would all be in detention for copying.
Here’s mine…

To whom it may concern,

An intervention to improve care of bereaved persons is most welcome and we thank you for seeking our comment at such a critical time with so much grief and so much misconception of what good bereavement care entails.

This opportunity to educate a grief illiterate society and it’s professionals that currently shames and blames the grieving for failing to achieve unrealistic goals at their most vulnerable is most timely.

However, your report is so focussed on time since death and the emotional response, that I fear it may be missing the very essence of effective bereavement care. Instead, I beseech you to refocus your attention away from ‘what is wrong’ and instead, towards ‘what has happened’ (Kidd 2017).

My organization works with parents, primarily Mothers, bereaved as a result of the drug and opioid epidemic.

I am one of them.

This is a field where all bereavements are what you would term ‘complicated’.

This is the hidden cohort where, unlike the dead, their numbers are neither published nor counted. Currently at over 107,000 dead in 2023 alone, over 214,000 parents were left in profound grief in just the past year.

To put that into perspective 20,000 US lives were lost in Vietnam, that’s 2.5 months in the drug epidemic.
2023 alone brought 35.6 times the deaths at the 911 terrorist attack.

Considering the statistics, is it not time to declare this a grief epidemic worthy of attention?

The illicit drug landscape has changed and it affects everyone, yet for those bereaved, isolation is very real.
Hindered by shame, criminality, stigma, poor language and a lack of understanding around substance use, authentic grieving is for many, a challenge.

Delays whilst awaiting autopsy, toxicology, criminal inquiry or lawsuit outcomes, may mean that the grieving process may not commence for many months or years.

Anticipatory grief, is a huge factor for this demographic where the loss of ‘the child we knew’ in myriad ways to SUD and the threat of death, often precedes the physical death.

Access to effective support is a financial hurdle for many and the fear and stigma of mental diagnoses in this already marginalized group is a profound barrier. A fear justified in Eisma et al. (2019) illustrating that a PGD diagnosis deleteriously affects a persons societal standing. ‘Complicated identity development as a result of labelling an already ostracized cohort’ as demonstrated in Goldsmith et al 2000 leading to further discrimination Jamison (2021) can be applied here. Considering Thieleman et al 2023 shows that in their study 59% of parents bereaved by overdose qualify for a PGD diagnosis and women are more than twice as likely to be diagnosed (Dyregrov & Dyregrov, 1999; Kersting & Kroker, 2010; Newson et al., 2011) we see that this group are at great risk of myriad repercussions that follow a PGD diagnosis.

The real value of the DSM diagnostic, is in truth, purely for seeking approval and compensation for care via health insurance reimbursal Linklater (2014). We create an abnormality so that treatment can de deemed ‘medically necessary’ by health insurance providors. Is this not the tail wagging the dog?

Instead of pathologizing the grieving so that they may access to support, let us return to the Z Code ( Z63.4) and… seek that Congress compel insurance reimbursement NOT predicated on a mental diagnosis as key, if we are to truly improve bereavement care.

This is a cohort that knows too well that medication is not a solution and for many it is experienced as danger.

Considering the demonstrable circumstances of the peculiarly US pharmaceutically sparked opioid crisis, manipulating studies, bribing doctors, fuelled by insurance companies and un fettered by the FDA, a distrust in pharmaceuticals is to be both expected and deserved as it is the industry that brought them to this catastrophe.

The misconception of what is to be expected in the grieving process by the medical establishment often results in unhelpful heavy medication, this would apply to Naltrexone and Benzodiazepines.

These families do not need a pharmaceutically sponsored study to illustrate the effects of Naltrexone, many have witnessed the anhedonia first hand. Clement Bellet concurs (Bellet et al., 2018).

Commonly, the addictive quality of Benzodiazepines have plagued their lives, for others, they soon find out that no matter how high the dosage, “they don’t bring back dead children” and so, they too, find themselves in the grip of chemical dependency. Attempts to medicate over 200,000 parents, compounded every year, is considered a win/win for pharma and for those who can not access the prohibitively priced medications it will be ground hog day.

In grief work, it matters WHO died.

Traumatic bereavement, catastrophic loss of a child is very different from sequential bereavement of an elderly parent or grandparent. The pain of child loss is as intense and as enduring as the love we have for our living children. (Hibberd et al. 2010, Morris et al. 2019, Thieleman et al 2013).

As we are flooded by social media with parents who ‘grieve’ their child graduating high school... I remind you that the agony of child death is forever, not just for college semesters.

Institutional grief illiteracy is evident in the recommendation that compassionate leave for the death of a child is 1-3 days (Society for Human Resource Management , 2008.)

It matters HOW they died.

Sudden, unexpected death, violent death, stigmatized death of a child is a very different experience from the death of an elderly parent after a long life or illness. This requires more nuanced care and again, any time line would suggest a misunderstanding of the non linear (as mentioned in your report) process of such grief and attached traumas as in anticipatory grief.

It is common for bereaved parents to ache for their lost child, express a longing to be with them and an inability to live without them. However, it is widely known in the grieving parent community that this deep chasm of yearning can not be explored with a therapist for fear of a misinterpretation without closer scrutiny, as suicidal ideation and an ensuing unhelpful psychiatric hold.

When internal emotions do not match societal norms, the impact is negative (Juth et al., 2015; Livingston & Boyd 2010). This policy creates fear for both parties, the therapist and the client, skews the research and leaves the bereaved without a safe place to process and interpret such thoughts and with the notion that such thoughts are abnormal, when in fact they are not and the feelings are justified and far beyond a threat of self harm. This is unhelpful for both parties. Such thoughts are kept a secret due to fear that the therapist is too scared to hear them.

Better education in Compassionate Catastrophic bereavement care is paramount for this field to succeed. These parents need to be supported, not feared, by therapists or themselves.

Death education boosts self confidence in providors (Bagatell et al 2002) and improves outcomes for the bereaved (Chan 2005, Cacciatore 2009).

In closing it would be remiss of me not to impart that the vast majority of the unhoused community that I have worked with ended up on the streets as a DIRECT result of catastrophic bereavement. A favorable outcome from this report would go a long way to solve yet another crisis.

But the care needs to be accessible, nuanced, affordable and free of federal restrictions.

The favored support groups (Johnson et al., 2009) and Non Profits, need financial aid, unbound to corporate federal dictats that hinder nuanced individualized care, emotional intelligence and interfere with the trust relationship which is so much more relevant than the choice of modality techniques (Hubble 1999).

It has been observed that PGD symptoms appear to facilitate post traumatic growth (Hogan & Schmidt, 2002). Grief allowed, can influence beneficial personal growth (Bellet et al., 2018).

In the light of these studies, hindering a natural, though maybe lengthy incorporation of our dead children into our life without their physical presence, would be reminiscent of Conversion Therapy, robbing the world of the extensive network that work tirelessly, many without pay, inspired by their painful, eternal loss to work towards a better more compassionate world.

Regards

Sheila Scott, Luke’s Mother.

That’s a very longwinded and fully cited way of saying…
It’s not me. It’s you.
Help us get access to proven support without your addictive, mind-numbing drugs and reputation-damaging insurance caveats, coz you’ve done enough damage already…
OR get the fuck out of our way.
And if you have the sense to heed us… you can reap the benefit of an unpaid army of bereaved Mothers furiously doing the work that you should have done BEFORE it got to this.
Your move.