When I developed Wired In and worked in the addiction recovery field, I was living in South Wales. When my daughter Annalie was in medical school in Edinburgh, I used to fly up from Cardiff to visit her. I soon came to love Edinburgh. That positive feeling for the city increased greatly when I met Dr David McCartney.
David ran Lothians and Edinburgh Abstinence Programme (LEAP), a programme that offered structured treatment based in the community using a blend of evidence-based interventions. The patient group in treatment operated as a therapeutic community. David was in recovery himself. I loved visiting LEAP every time I was in Edinburgh, and meeting the patients and staff. I’d sit in on group sessions and spend time talking to the patients. David and I became good friends and I hold him in the highest regard.
I’ve recently been checking out David’s blog on Recovery Review. He writes so well and covers a number of key themes relating to addiction recovery. Here is David’s latest post, ‘Nothing to mourn; just a drug addict’, focused on the issue of stigma.
“A tweet from a colleague affected me this week. The subject was stigma in substance use disorders and he related how, at the funeral of a relative who had died very young from a heroin overdose, a family member callously slandered the dead man and skillfully ‘othered’ him. The message was ‘he was not at all like us’.
This technique of labelling, blaming, applying stereotypes and stripping those with substance use disorders of their humanity – their sameness to everyone else – might be an temporarily effective way of distancing oneself from the horror and pain of addiction and loss, but it is harmful to those struggling with substances, their families and, if truth be told, to the person using stigmatising language.
As a person with lived experience of substance use disorder and recovery, I’ve had my own share of stigmatisation. I’ve just written a book chapter about it. It diminishes you, discredits you and the discrimination that accompanies it has real-life effects. Often adding to self-stigmatisation, external forms of stigmatisation are pernicious and paralysing.
Two bits of research on stigma caught my eye recently. In the first [1], researchers compared public stigmatisation of those with alcohol use disorder [AUD] with other mental health conditions.
They defined stigma ‘as a process in which people are firstly labelled and hereby assigned to an out-group, secondly subjected to stereotypes and prejudices, and thirdly exposed to discrimination and social distance.’
They found that ‘stigmatizing beliefs and behaviours toward people with alcohol use disorder were pervasive in the general population and usually more pronounced than toward persons with depression or schizophrenia.
More specifically, people with AUD tend to be perceived as more dangerous and more responsible for their condition, as well as being faced with a greater desire for social distance and a higher degree of acceptance of structural discrimination than people with substance-unrelated disorders.’
The findings threw up some challenges, as it’s all more complex than it seems. Framing alcohol use disorder as a mental illness seems to reduce the expression of anger in others, but increase the expression of fear.
The authors say: ‘If regarded as a stable and trait-like condition, related to assumptions on “bad character,” blame and feelings of anger might be less pronounced but fear and social exclusion nevertheless high.
Conversely, if regarded as a “bad behaviour”—that is, a state that needs to be overcome—moral judgments and blame of people with alcohol use disorder could be harsher, possibly leading to more discrimination and social exclusion.’
These dilemmas and seeming contradictions need more research, but what is clear is that those with alcohol use disorder are seen as more dangerous, more responsible for their condition and are more likely to experience distancing and discrimination than those with other mental health conditions.
The Norwegian research paper titled ‘Nothing to mourn, He was just a drug addict” – stigma towards people bereaved by drug-related death’ [2] provoked the Twitter exchange I referred to above. If the first study appeals to the mind, then this is a study that goes straight to the heart and emotions. I felt angry and sad on reading it, but I’m glad I did. There are shared themes between the two.
Norway is producing a lot of impactful research at the moment. In this study, the researchers recruited 255 people who had lost a someone close to a drug-related death. Using both standardised and open-ended questions, they analysed person to person communications experienced by participants following bereavement.
Almost half of the participants ‘reported experiencing derogatory remarks from close/extended family and friends, work colleagues, neighbours, media/social media and professionals’. That’s right, when they were grieving, those closest to them made cruel, harsh comments when what they needed most was love, comfort and support.
The content of these remarks identified in the data was grouped into four themes:
- Dehumanising labelling
- Unspoken and implicit stigma
- Blaming the deceased
- The only and best outcome
‘I was told she was a fucking junky and a fucking whore who had not deserved to live. She should have been taken on the day she was born; she had no right to a life, and she used others’ tax money to get drugs, tricked men into giving her money by selling herself. Girls like that should die.’ Said about a woman’s 20 year-old daughter
More quotes:
‘It was a choice he made, so it was all his own fault.’
‘You are lucky to have been spared more anguish when he died.’
‘The death could not be such a big deal as he had never wanted to help himself.’
Pretty heart-breaking.
One of the things that works best to tackle these kinds of attitudes is for those of us with lived experience to share our stories. Contact with those with lived experience has been shown to tackle stigma. The more that it can be seen that we are ordinary (actually, in terms of recovery – extraordinary) human beings, ‘the same as’ rather than ‘other’, the more we dissolve stigma, shame and discrimination. This is not always without risk though.
The researchers’ bottom line
Such communications were disgraceful and harsh, and contributed to marginalizing a group of grieving individuals who required support rather than being ostracised. Making people aware that stigma exists, increasing knowledge as to why it occurs and how it is transmitted in society can help remove the stigma’
Continue the discussion on Twitter @DocDavidM
[1] Kilian, C., Manthey, J., Carr, S., Hanschmidt, F., Rehm, J., Speerforck, S. and Schomerus, G. (2021), Stigmatization of people with alcohol use disorders: An updated systematic review of population studies. Alcohol Clin Exp Res, 45: 899-911. https://doi.org/10.1111/acer.1459
[2]Kari Dyregrov & Lillian Bruland Selseng (2021) “Nothing to mourn, He was just a drug addict” – stigma towards people bereaved by drug-related death, Addiction Research & Theory, DOI: 10.1080/16066359.2021.1912327”
I will be posting more relating to David in the future. In my opinion, he has done a great deal to help people overcome addiction, enhance understanding of addiction recovery, and enable the growth of recovery communities and the addiction recovery advocacy movement.
