When I was five or six years old, my grandfather -- my mother's father -- died of what I was always told were complications of heart disease. It was not until much later, after I had completed my medical training in psychiatry, and had already been working for a long time using neuroimaging to study the addicted brain, that I learned the real reason for his death. My mother called me one day, near the end of her life, and said, "Nora, I need to tell you something I have never spoken to you about." She revealed to me that my grandfather had been an alcoholic, and that he had killed himself in his distress at not being able to control his strong urges to drink.
This came as a shock. My mother had kept the real reason for my grandfather's death a secret from me, even though she knew that my whole professional life was devoted to trying to understand what drugs do to the brain. She had heard me speak of addiction as a disease of the brain. So I wondered how I had miscommunicated -- how I had not made her realize that it was okay to speak about addiction, that there should be no shame in it.
I've thought about this many times, and I realize that describing addiction as a "chronic brain disease" is a very theoretical and abstract concept. If you were a parent with a very sick child, and you went to the hospital and the doctor said, "Your child is in a coma because he has diabetes," and the doctor went on to explain that diabetes is a chronic disease of the pancreas, would it help you understand why your child was so severely ill? No it wouldn't. What explains it is the further understanding that the cells in the pancreas can no longer produce insulin, and we need insulin in order to be able to use glucose as an energy source -- so without it, the cells in our body are energy-deprived. That explains why your child is so sick.
To explain the devastating changes in behavior of a person who is addicted, such that even the most severe threat of punishment is insufficient to keep them from taking drugs -- where they are willing to give up everything they care for in order to take a drug -- it is not enough to say that addiction is a chronic brain disease. What we mean by that is something very specific and profound: that because of drug use, a person's brain is no longer able to produce something needed for our functioning and that healthy people take for granted, free will.
All drugs of abuse, whether legal or illegal, cause large surges of dopamine in brain areas crucial for motivating our behavior -- both the reward regions (such as the nucleus accumbens) as well as prefrontal regions that control our higher functions like judgment, decision making, and self-control over our actions. These brain circuits adapt to these surges by becoming much less sensitive to dopamine, a process called receptor downregulation. The result is that ordinary healthy things in our lives -- all the pleasurable social and physical behaviors necessary for our survival (which are rewarded by small bursts of dopamine throughout the day) -- no longer are enough to motivate a person; the person needs the big surge of dopamine from the drug just to feel temporarily okay ... and they must continually repeat this, in an endless vicious cycle.
I go back a lot to that conversation with my mother. I realize that her shame was not just because her father had been an alcoholic, but because he had died by suicide, out of hopelessness and helplessness at his inability to control the strong urges to drink. He would try to quit, but then he would relapse, and this cycle would repeat again and again and again ... until there was one last moment of self-hatred.
We can do much to reduce the shame and the stigma of drug addiction, once medical professionals, and we as a society, understand that addiction is not just "a disease of the brain," but one in which the circuits that enable us to exert free will no longer function as they should. Drugs disrupt these circuits. The person who is addicted does not choose to be addicted; it's no longer a choice to take the drug. Addicted people in my laboratory often say it's not even pleasurable. "I just cannot control it." Or they'll say, "I have to take the drug because the distress of not taking the drug is too difficult to bear."
If we embrace the concept of addiction as a chronic disease in which drugs have disrupted the most fundamental brain circuits that enable us to do something that we take for granted -- make a decision and follow it through -- we will be able to decrease the stigma, not just in families and workplaces but also in the healthcare system, among providers and insurers.
Once people understand the underlying pathology of addiction, people with the disease will not have to go through obstacles to obtain evidence-based treatments (such as buprenorphine or methadone for opioid addiction) but will simply, nonjudgmentally, receive the help they need, like a child with diabetes or a person with heart disease or cancer. They won't have to feel that shame, or feel inferior, because people understand that they are suffering from a disease that should be treated like any other.