When I lost my son Dylan to Alcohol Use Disorder (AUD) in 2022, my world changed forever. Since then, I’ve worked alongside the Foundation for Alcohol Research and Education (FARE), determined to raise awareness about the devastating impact of alcohol misuse—particularly among young people—and the stigma that continues to surround it.
The Hidden Cost of Stigma
Stigma is more than a social slight—it’s a barrier to care, a source of shame, and a contributor to preventable deaths. Whether it manifests in judgmental attitudes from the public or systemic shortcomings in healthcare, stigma perpetuates harm. Individuals with alcohol-related disorders are often blamed for their condition, which can lead to inadequate medical responses and missed opportunities for intervention.
My son Dylan was just 26 when he died. His journey with alcohol began innocently at 18, sharing drinks with friends. But what started as social drinking quickly escalated into dependency, exacerbated by underlying mental health struggles. Alcohol became his coping mechanism, and eventually, his captor.
Dylan was candid about his early choices, acknowledging that picking up that first beer was his decision. But he couldn’t have foreseen how addictive alcohol would be—or how profoundly it would affect his developing brain. As his mental health declined, his reliance on alcohol intensified, and the stigma surrounding his condition only deepened.
Healthcare’s Gatekeepers: A System in Need of Reform
Healthcare professionals, particularly general practitioners, are often the first point of contact for individuals with AUD. They are, in many ways, the gatekeepers to treatment. Yet, many lack the training and resources to respond effectively. According to the U.S. Substance Abuse and Mental Health Services Administration (SAMHSA), inadequate care for individuals with substance use disorders can lead to “potentially hazardous treatment methodologies”.
Dylan’s experience illustrates this gap. In the early stages of his liver disease, he was prescribed thiamine to protect his brain and memory. But as his condition worsened—marked by high liver enzyme counts, incontinence, and severe pain—his symptoms were dismissed or inadequately addressed. Critical tests were not ordered. Referrals were delayed. By the time he was seen by specialists, it was too late.
This is not an isolated case. Research shows that stigma in healthcare settings can deter individuals from seeking help and can negatively impact the quality of care they receive. The National Institute for Health and Care Excellence (NICE) emphasizes the importance of building trusting, non-judgmental relationships with patients who misuse alcohol, noting that stigma and discrimination are common and harmful.
Structural Stigma and the Ethics of Transplantation
Structural stigma—discrimination embedded in policies and institutions—can be just as damaging. One stark example is the six-month sobriety rule for liver transplant eligibility. While intended to ensure successful outcomes, this policy can be fatal for those who cannot survive that long without a transplant.
When Dylan was admitted to hospital, his gastroenterologist advocated for a transplant due to his age and critical condition. But the transplant team declined. The only conclusion I could draw was that Dylan’s diagnosis—Alcohol Liver Disease—had disqualified him.
Despite being young, having a supportive family, and showing a willingness to recover, Dylan was denied a second chance. He endured painful procedures, excessive bleeding due to low platelets, and a level of suffering no one should have to face.
The Power of Language
Language shapes perception. Terms like “addict,” “junkie,” or “abuser” carry heavy, dehumanizing connotations. They reduce individuals to their condition, stripping away their identity as sons, daughters, siblings, and friends. Research has shown that stigmatizing language can reinforce negative stereotypes and hinder recovery.
Conversely, framing AUD as a “disease of the brain” fosters empathy and understanding. It’s time we shift the narrative—from blame to compassion.
Moving Forward: A Call to Action
To dismantle stigma and improve outcomes for those with AUD, we must:
- Use respectful language that avoids reinforcing negative stereotypes.
- Educate healthcare professionals about the neurological and psychological impacts of alcohol misuse.
- Promote social inclusion, ensuring individuals with AUD feel supported, not shamed.
- Challenge discriminatory policies, such as the six-month sobriety rule for liver transplants, which may deny life-saving treatment to those who need it most.
Dylan’s story is not unique—but it should be a wake-up call. We owe it to him, and to countless others, to build a society where addiction is treated with the dignity and care it deserves.
