This is an article written by Adfam's Chief Executive Vivienne Evans for The Vision Project, a programme of articles, podcasts and events marking the 20th anniversary of Developing Health and Independence (DHI), an organisation based in Bath that supports families affected by substance use.
Adfam has been listening to the experiences of families affected by substance misuse for over 30 years. Over and over, we have heard stories of the stress, anxiety, physical ill health and financial burdens that caring for – or just being in the orbit – of someone with an addiction can cause for a so-called ‘affected other’.
‘When I was a young mother I never thought I would spend 35 years of my life fighting dealers and the drugs, lying to my neighbours, stripped of my dignity, having lost everything.’
Research bears out this personal evidence: the impact of living with a family member who has a drug/alcohol problem can be devastating. (1)
There is a social side to this too; family celebrations can be a nightmare – the fear of embarrassment and humiliation because of a loved one’s inappropriate behaviour – or the stress of avoiding or having to answer difficult questions – is ever present.
And then there is social exclusion. This is a term defined as exclusion from the prevailing social system and its rights and privileges, typically as a result of poverty or the fact of belonging to a minority social group. But family members affected by substance misuse are not members of a minority social group. In fact, UK Drug Policy Commission research (2) suggests a minimum of 1.5 million people are affected by someone else’s drug use. Other studies have indicated this number is up to 8 million.
The social exclusion which families experience is rooted in the stigmatising effect attitudes in society can have on people affected by someone else’s substance misuse. The definition of stigma is a mark of disgrace or infamy; a sign of severe censure or condemnation, regarded as impressed on a person or thing; a ‘brand’. Culture and language – often displayed in the media – can define a user, rather than the addiction itself and this can apply to family members too, resulting in them not speaking about their situations, not seeking help and support for themselves, and consequentially feeling isolated and socially excluded.
“Stigma for me meant being treated differently once people knew of my son’s drug use."
“...because there’s a drug user or an alcoholic in the family, a lot of services think the whole family’s the same so you’re all judged on that person’s behaviour or that person’s lifestyle."
Stigma and drug use have been associated for a long time. They have also been popular topics of debate in recent years and the focus of a growing body of research. But in the same way that families have often been absent in other drug policy discussions, their perspective on stigma is much less widely researched. Often, regardless of their own behaviour, families find themselves defined by the ‘addict’ label attributed to their drug using relatives.
Those affected by someone else’s addiction are living double lives; they live in a silent struggle that very few know about for fear of being judged.
As well as this externally imposed ‘stigma by association’, the high levels of guilt and self-blame experienced by the families of drug and alcohol users, particularly parents who believe that the upbringing they provided is responsible for the substance misuse, mean that some families effectively stigmatise themselves through feelings of guilt and low self-worth.
Stigma can cause social exclusion, and so can poverty. Many families experience financial hardship due to supporting a loved one with an addiction. This can be particularly true for kin carers – family members who take on the care of children because their birth parents have a substance misuse problem. There are an estimated 200,000 children and young people in kinship care and over 50% of these cases are as a result of substance misuse. These kin carers receive a negligible amount of allowances and benefits in comparison to foster carers, something we are supporting a campaign to change.
In an era of austerity, budgetary constraints have resulted in a reduction, and often the disappearance, of many family support groups. Yet the need to support families affected by substance misuse is as acute as ever. We know from our supporters that many of them suffer not just from the effects of addiction, but of multiple and complex needs, including domestic abuse and mental ill health. Treatment services can fail to prioritise family support because of a lack of finance, and those families which do receive support are those whose loved ones are accessing treatment, a small proportion of the number of families affected. This lack of support provision means that families are further excluded and isolated.
It’s time to end the social exclusion experienced by families. Austerity and its consequences require political and economic change; the public perception of families affected by drug and alcohol use requires a cultural shift. I believe that the best way to combat stigma, and the resulting social exclusion, with the resources we have currently available to us, is to take the issues out in the open, not hide them away. That’s why we have launched our #StigmaMakesMeFeel campaign. We want people to think about how families experience stigma, and tell us how that makes them feel. This includes family members with lived experience, professionals supporting these families but also those without direct experience - so we can put stigma on the agenda and start an open and honest discussion.
By talking about this issue candidly, I hope that we can create a groundswell that counters the blame and guilt – and social exclusion – weighing so many families down, adding to the stress and distress that caring for, and about, a loved one with an addiction can bring. I also hope it can persuade decision makers of the crucial need to provide services and support for this neglected group.
(1) Orford, J., Velleman, R., Copello, A., Templeton, L. and Ibanga, A., 2010. The experiences of affected family members: a summary of two decades of qualitative research. Drugs: Education, Prevention and Policy, 17 (s1), pp. 44-62.
(2) UK Drug Policy Commission (2009) Supporting the Supporters: Families of drug misusers.