Breaking the Stigma Around the Opioid Epidemic

My younger brother J.T. died 10 years ago. He had the most incandescent personality, and he could light up a room with his smile. Growing up together, I had plenty to be jealous of: He was popular, extremely talented musically, and could always hit the basketball hoop and home runs. He was the best man at my wedding—and in my life.

When J.T. first went through treatment, I was confused by the stories he told me. I had no idea what OxyContin was. I didn’t understand addiction. When addiction and opiates killed him, I was left to figure out how to live in that void.

In the beginning, I was quiet about J.T.’s passing. It was an uncomfortable subject for me, and, in a way, I wanted to forget—not just because of the pain of loss, but also because of the huge stigma attached to the topic of addiction. But in the decade since, I’ve come to realize that J.T.’s passing happened during the early stages of the opioid and addiction epidemic currently ripping through significant parts of the United States. As I saw deaths by overdose steadily rising, I remembered how impactful that death often is for the families it leaves behind. And, I had a gnawing desire to help—in a way that would ultimately scale the broader lessons I’ve observed about how to break the crippling narrative we’ve built up around the opioid epidemic.

For me, that meant using my skills from my career as a geographer to create the Celebrating Lost Loved Ones map. It’s a crowdsourced initiative that allows family members to add a photo of their loved one to their story about opioid addiction. My line of thinking for creating the map was simple: I wanted to look beyond the numbers I saw on the news every night and bring center stage that real people—great people—are being lost. I also wanted others to be able to see what was happening around them, right there in their own communities and neighborhoods. Plus, people are more prone to pay attention to human stories over impersonal data points.

While the map began with only one name—that of my little brother—it now includes over 1,300 people (which, sadly, is still only a sliver of the epidemic’s victims, and the rough equivalent of the U.S. death toll due to opioid overdose for just over a week). Below are some of the lessons I’ve learned along the way about the epidemic, as well as the people it continues to affect. Some of these lessons are I think profound, some practical, but all important to take seriously if we want to combat the stigma around opioid addiction and its attendant consequences.

Death Is Just the Tip of the Iceberg

I’ve been struck by how many people, on sharing their personal stories, have said, “We have someone in our family we’re trying to keep off the map.” Indeed, many families are facing addiction alone, and they’re afraid to speak about it (as was the case with my family); it’s crucial for families to continue to support the person struggling with addiction. Death, in other words, is just one small part of this journey. Families need the time and space to process what’s happening, and they need to be able to do so in public, with the full support of their communities.

There’s No One Reason Why People Become Addicted

Anyone can become addicted to opioids. There are countless stories of people who suffered from an accident and, after surgery, became addicted to over-prescribed pain medications. Big pharma running amuck and often falsely stating that its pills aren’t addictive also has contributed to lives lost to the epidemic. On top of that, it’s also common for people struggling with mental health disorders or from PTSD (suffering as a result of sexual abuse or childhood trauma are common occurrences on the map) to resort to self-medication to stave off the emotional pain.

My point: There are innumerable reasons that explain why and how people develop addiction, and approaching each of these reasons with compassion is key to confronting stigma. We, as a society, must move beyond the platitudes of “people shouldn’t do this” and “just say no.”

Families Have a Strong Sense of Wanting Others to Remember.

After J.T. passed, I remember thinking: “I don’t want 10 years to go by and not be able to remember him.” I’ve heard other people express this fear, too. If you met someone who’s lost a loved one, I encourage you to ask that person a story about his or her loved one. It may seem uncomfortable to you, yes, but you’ll likely make the other person’s day—by remembering.

Stigma Will Likely Persist

“Dumb assed druggies made their choice.” “Declare a national emergency because a bunch of losers stick needles in their arms?” These are the sorts of comments that people have lobbed at stories covering the map via social media (probably without even viewing the map). I’m not optimistic that we’ll ever be able to rid the world of all its hate, but I do think that it’s possible to chip away at it. Hate often grows from a lack of understanding and empathy, and an aversion to difference. As the map balloons, my hope is that it will be able to positively influence people who don’t understand the epidemic, as well as those who aren’t immediately impacted by it.

But Hope Still Exists

While the Celebrating Lost Loved Ones map may not, at first glance, paint a positive outlook for grappling with the opioids epidemic, it’s emphasis on fueling attention, education, and coping with loss ought to provide some degree of solace. More than that, other organizations are also looking to move the needle. For instance, there’s Real Recovery Stories, another crowdsourcing map through which people share their experiences with addiction recovery; this community has an eye to creating, among other things, new branches of support for those in need of it.

Of course, there’s still much work to be done—and, more specifically, data to be collected. Just this week, the National Safety Council adopted the map and will be its new curator. NSC is already doing work around awareness, and its Survivor Advocate Network takes as a mandate helping surviving family members speak out. Looking ahead, I’m hoping that even more groups will ramp up their efforts to put additional resources in appropriate places, for instance by bringing together local governments that are mapping their own data about overdoses.

This work won’t bring back people lost to the epidemic. But expanding the tools at our disposal to fuel understanding is one way to keep more families from adding names to the map.