There’s a refreshing new voice in the addiction field—a voice that doesn’t always sing the establishment song, and is not afraid to question widely held beliefs.
The new voice is Kirsten E. Smith, PhD, postdoctoral fellow in the Intramural Research Program at the National Institute on Drug Abuse (NIDA). Her latest publication, “Disease and Decision,” appearing in the Journal of Substance Abuse Treatment, questions several tenets, among them the brain-disease model of addiction, the meaning of “recovery,” and the notion that previous drug addiction rules out even moderate use of alcohol and drugs.
In her publication, Dr. Smith shares her insights into the world of addiction.
She knows whereof she speaks—because she has lived it.
Her first sentence sets the scene: “At age 16, I injected morphine for the first time, and then started injecting heroin…”
Dr. Smith’s drug use began as a lifestyle choice, romanticized with the impetuousness and optimism of youth.
She didn’t expect anything horrible to happen, never thought that if she wanted to stop at some point, she wouldn’t be able to. At first, the negative consequences of her drug use were few. But gradually, oh so gradually, that changed—until, as she describes it, “my decisions to use were discordant with my intentions.”
In other words, she was addicted.
And, at age 23, she desperately wanted to quit.
The After began when the need for money led to bank robbery and a long stay in federal prison. Drugs weren’t accessible. “I could not have chosen to take them even if I had wanted to,” she says. The horrors of withdrawal were inevitable, and professional help for coping was not to be had.
Released from prison four years later, at age 27, she resumed her university studies and earned a PhD. Since then, Kirsten has focused on helping people with opioid use disorder and publishing her research findings.
In sharing her personal experiences with opioid use, addiction, and later, recovery, Kirsten hopes to “highlight the heterogeneity of people’s experiences and the insight that personal narratives can provide.”
Below are the five points Kirsten considers the most important in her publication, along with our summaries of her comments on each point. We encourage readers to read her full article. https://www.journalofsubstanceabusetreatment.com/article/S0740-5472(22)00156-8/fulltext
Being addicted does not mean that a person considers themselves to be in recovery
Kirsten doesn’t consider herself “in recovery.” “Rather, I am recovered,” she says. “I have been in sustained remission for over a decade.”
She describes her situation in detail:
I do not use the term “in recovery” to describe myself. I have been told that I meet the definition even if I do not embrace it. Respectfully acknowledging this, I would posit that I am recovered, not on a continual journey. If pressed on terminology, I would suggest that I am in “sustained remission.” I have used alcohol and, on occasion, other drugs since my nadir, but have not met SUD diagnostic criteria in 14 years.
Moderated alcohol and drug use after addiction is achievable for some
Use in moderation is possible. Kirsten still uses alcohol, on occasion; drugs, too, but not recently. Her experience suggests that just as there are many types of addiction, there are many variations in the situations that follow addiction.
Kirsten’s periodic opioid use is of two types. Only once did she have what she considers a “lapse.” The other happenings were planned use events, and she prepared extensively to make them as safe as possible. Her last use event was almost five years ago. It was the last because, she explains: “Even semi-regular use was unthinkable. I knew that I could not do the work I wanted or keep the life I had if I were to become addicted.”
She adds that some people might call all the events “lapses,” or “planned relapses”; they hardly indicated compulsion, or haste. She asks, rhetorically, “Was this disease or decision? Was it both?”
Many addiction treatments do not adequately consider the patients’ desired goals
Kirsten has found that in most treatment settings, abstinence is the only acceptable clinical outcome. “People’s values, preferences, and hopes are of less concern.”
Her own treatment, she says, was based on a notion that people with SUDs tend to be similar; that they have a chronic, relapsing disease, with no capacity to control their use. This idea felt wrong to Kirsten at the time. Her experience since, she says, has found it to be wrong indeed.
When Kirsten was a patient, no one asked her to define her treatment goals and desired outcomes. She assumed this was because her treatment was mandated, a result of her felony conviction. But later, during her training, she learned that often people seeking therapy for SUD on their own (not mandated) aren’t asked those questions either. “Clinic staff announce what is on offer without discussing other approaches,” Kirsten says. “Take it or leave it.”
Because Kirsten considers this point so important, we expand on it:
My exposure to SUD treatment, on the receiving and providing end, left me with the impression that many medical and community-based SUD providers do not routinely ask addicted people what they want. In some settings, addicted people are actively discouraged from wanting something or from being vocal in defining their recovery. If they try, they are told that they are selfish; that their character defects and thinking were what got them into trouble; and that thinking for themselves is dangerous.
Lived experiences of drug use can help scrutinize disease models of addiction
Experts in the field can—and do—theorize about the accuracy of the brain disease model of addiction. People with the vantage point of lived experience can provide valuable insight.
Kirsten says, “If I choose to use heroin tomorrow (unlikely but possible and certainly more probable than for others without my past), I would not agree with the assertion that such an event would be a symptom of brain pathology, though I can see how some might.”
She underscores how important it is, when studying and treating addiction, to ask patients and participants about their experiences during and after addiction, and how they perceive their behaviors in the settings where they occur.
What are the factors they believe are associated with successfully quitting or controlling their use? We should ask them what they intend and want to achieve before we define and measure treatment or research outcomes that may or may not comport with what they want.
A brain disease model of addiction may unintentionally harm and stigmatize people
Reflecting on her past, Kirsten contrasts the way her brain functions now with the way it did during addiction:
I wake each day knowing what I want and intend to do; then I set about doing it. It is the opposite of addiction and not particularly reflective of a diseased brain. My brain was changed by time, circumstance, and continued drug exposure. After repeated drug-taking stopped, it was again changed by time and circumstance. So, it shall continue.
Typically, the model of brain disease is discussed in academia, Kirsten points out, “with the real-world, unintended consequences of the ‘disease’ label seldom considered.” She adds that although people with addiction are stigmatized when someone moralizes about drug use, stigma may also come from well-intended labels.
“I posit,” she says, “that we should not need labels to care about addicted people and make scientifically informed treatment accessible.” She points out that people with addiction deserve help, because they need it, or they want it. That holds true, she believes, regardless of labels that try to describe how their problems arose, or what path they are likely to take.
Some labels, she has found, even those needed to clinically classify human behavior, may cause irreparable harm. She calls on clinicians and researchers to give more thought to the idea that they have an obligation to reflect more deeply on the implications of addiction.
Advice for Colleagues
As scientists, we should remain skeptical but open to what we might hear. As clinicians, we should remain open, and should recognize and respect the inherent dignity and complexity of the person. Perhaps most controversially, we should pause before conjecturing about the inevitability or trajectory of brain pathology in people who have experienced addiction.
Kirsten’s Life—Today and Tomorrow
Today, Kirsten is many things: “a scientist, a dog mom, a wife, a sister, a runner, a daughter, a citizen, a human.”
She is also a postdoctoral fellow at NIDA’s Intramural Research Program, “coming full circle from one federal facility to another,” she writes, revealing her sense of humor.
“I am here,” she says, “because of and despite my past; because of inherent privileges I was afforded by chance; and because of significant family support.”
Soon Kirsten leaves NIDA, having accepted a faculty position at Johns Hopkins. She looks forward to continuing to share with colleagues and students the knowledge and insights she has gained during her years of lived experience.
Comment from Noel Vest, PhD:
This essay by Kirsten Smith is likely the best depiction of the despair experienced by the addicted brain I have ever read. I was especially moved by her commitment to higher education despite the barriers she faced due to her incarceration.
Students returning to society post-incarceration deserve much better.
There is no doubt that Kirsten is already an incredibly gifted and inspired scientist, with an awesome future ahead of her. I am most excited to know that her unique perspective, forged through direct experience, is being welcomed in academia in a way that may not have been possible 10 years ago. I hope that Kristen’s sharing her addiction history will inspire other academics with lived experience of hazardous drug use to talk openly and honestly about their own struggles, in the hope of reducing substance-use stigma and inspiring the next generation of formerly incarcerated scholars.
NOTE: Kirsten Smith, PhD, and Noel Vest, PhD, are colleagues, collaborators, and kindred souls.
Smith KE. Disease and decision. J Subst Abuse Treat. 2022;142:108874. doi:10.1016/j.jsat.2022.108874
Smith K. Afraid to tell the truth. Lifelong Learning in Clinical Excellence. Closler. Johns Hopkins Medicine. April 14, 2022. https://closler.org/lifelong-learning-in-clinical-excellence/afraid-to-tell-the-truth
Stull SW, Smith KE, Vest NA, Effinger DP, Epstein DH. Potential Value of the Insights and Lived Experiences of Addiction Researchers With Addiction. J Addict Med. 2022;16(2):135-137. doi:10.1097/ADM.0000000000000867