I Wish I had Known
“I wish I had known.” I heard that over and over after my brother Greg died. From college friends who knew him for fifteen years. From colleagues that he spoke with every day.
That so many of the people in his life had no idea that Greg had struggled with addiction disease for five years was no accident. Greg went to great lengths to hide his disease from everyone because of the rampant stigma he knew it carried. And the crushing shame he felt every time he experienced a recurrence. He was most afraid of what his work colleagues and professional contacts would think about him if they knew. Greg had worked tirelessly for years to build a reputation as a bright, practical and engaging young partner at a venture capital firm. His colleagues not only respected his judgment, they sought it. The founders of the portfolio companies Greg advised turned to him with their most confounding and critical problems. He knew they trusted his advice and appreciated his balanced blend of honesty and encouragement. What would happen if they found out that he was struggling with opioid use disorder? That he went to AA meetings every morning and counseling every week? That he worried every day that his relentless disease would come roaring back if he loosened grip even slightly?
Unfortunately, most of them never found out. The few that did knew only bits and pieces of the story. And even then, only because Greg finally agreed to go to in-patient treatment for a month and had no choice but to tell his partners so they knew why he was not responding to calls and emails. There was no adverse impact on his career trajectory. No loss of confidence in his talents and capabilities. I was not surprised, but Greg was – at least to some extent.
I told Greg that based on what I knew of his colleagues and what he had accomplished for his firm, I thought they would be fully supportive of him as he bravely fought his disease. But I understood why Greg was so worried about the stigma that haunted him. There is an astonishing and unacceptable ocean of ignorance surrounding addiction. Many people continue to hold the view that it is not a medical disease, but a moral failure or character defect. I have no doubt that in time that view will seem as absurd as the fact that humans once upon a time believed that evil spirits caused epilepsy. But patience is no virtue here – the problem is far too urgent and the stakes are far too high. According to the CDC, about 130 Americans die every day from opioid overdose. On July 18 of this year, my brother was one of them. The belief that medication-assisted therapy (MAT) should not be used to treat addiction because it “replaces” one drug with another also urgently needs to go the way of the dinosaur. The data on MAT are robust. Buprenorphine (Suboxone) and naltrexone (Vivitrol) can – and do – change the outcome and give patients a fighting chance to conquer this disease and live. The belief that these medications should be discouraged because they sustain chemical dependence is as harmful and scientifically unsound as the belief that vaccines cause autism. We have empirically-validated, science-based therapies to combat this unforgiving disease. We need to use them.
I am not speaking to these issues from up on high. I understand how the unfounded beliefs about addiction disease continue to thrive. I used to hold some of them. When Greg first got sick, I thought that recovery was simply and solely a matter of willpower. If he wanted to stay “clean” badly enough, he could. The game was not fixed and the deck was not stacked. It was all up to him. How wrong I was. It took two years of watching him suffer and struggle with this disease to finally see past my anger and the beliefs it fed. To see that no one would ever choose this disease. To see that it is such an exhausting and unfair battle to have to fight. And to see that stigma and ignorance make it even harder – and impossibly lonely.
I was also ignorant about medication assisted therapy, especially buprenorphine. I heard people express concerns that it was dangerous or unsustainable to keep “addicts” on opioids. That many treatment programs forbade their use because of philosophical views that total abstinence is the only “true” path to recovery. That message aligned perfectly with my belief that Greg’s health was only a matter of his willpower. It also resonated with my anger at him for putting our family through such a heartbreaking saga, and for not trying hard enough to just stop using – as if I or anyone else could possibly know his internal struggle well enough to make such a judgment. I am not a doctor. I did not read the peer-reviewed literature on MAT and buprenorphine. I carelessly adopted bad information that fit with my ignorant, pedestrian beliefs about addiction. There is no shortage of it, especially online. Bad information and ignorance are not harmless. When it comes to addiction disease, they can – and far too often do – mean the difference between life and death.
Greg was on buprenorphine for more than three years. His disease recurred from time to time during that period, but he always bounced back. Earlier this year, Greg switched from buprenorphine to naltrexone for a few months, and then went off medication altogether. We lost him a month or so later. I still have a hard time grasping the reality that he is gone.
I try not to let my mind wander into what ifs. I don’t know if Greg would still be with us if he had not felt the need to keep his struggle with this disease hidden because of the stigma. I do not know for certain that staying on buprenorphine would have prevented his death. I cannot change the past. But I know that good information can change the narrative arc for others who are suffering from addiction disease. Information grounded in sound scientific principles and hardened through empirical validation. Information that extinguishes stigma and shame, allowing people to get the care, treatment and support they need. That information exists. We can all play a part in sharing it.
DCM
9.5.19