Elsa’s Story

The biggest barrier in our work is the stigmatization of consumption and, in turn, the people.

Elsa – Produced by Health Canada

Narrator: 

In Plain Sight is a Health Canada audio series that explores the personal stories of people affected by the opioid crisis. 

The most recent data shows that every day, approximately 12 people die from opioid overdoses in Canada. 

We see this on the news. We know that it’s happening. We know that it’s real. Yet, we tell ourselves that it couldn’t happen to the people we know, the people we work with, the people we love. That it couldn’t happen to us. 

The reality is, the opioid crisis is happening right before our eyes, in plain sight, and it can affect anyone. There are thousands of stories waiting to be heard. 

Elsa is a social worker at a harm reduction organization. Every day she offers support and compassion to people with substance use disorders. Let’s listen to her story… 

Elsa: 

My name is Elsa. I’m a social worker. Basically, what I do is work directly with people according to their needs, but always in terms of their substance use. We can offer to set up a meeting with a social worker to help them achieve their goals, no matter what those are – reducing their substance use, quitting, asking questions, getting information, or asking questions about a family member who’s using. We also provide all the sterile equipment such as crack pipe kits, injection kits, naloxone kits, and always with information and education. But we also go out into the community of substance users. We meet them in their environment, always with the aim of improving their living conditions and meeting their needs in terms of the distribution and equipment they need. The person is truly at the heart of our interventions and our mission; our priority is always the well-being of the person being helped. 

My biggest challenge is to get people who want to get involved, but who have all too often been excluded and judged, to see their experience really as something positive, something they can pass on to someone else. So that it becomes an experience that helps them and others as well. Basically, my work allows me to encourage those same people to deliver their message, claim their rights, name the injustices they have suffered. It’s always a matter of giving those people back their power over their lives, their rights, their voices, and that’s a challenge in itself, because when people feel socially excluded, it’s not easy to get them to consider their experience as a form of expertise that can help others. To come to that awareness is one thing; and then there’s connecting with other people who are using, not necessarily the same substance, not necessarily the same experience, not the same age – that’s another challenge. You know, there are clashes in the kinds of drug use, the kinds of substances, even the way they’re administered. Someone who injects, someone who smokes, it’s very different, even though there are a lot of similarities, but for the people who are living that life, it’s hard, you know, to create a bond of trust with someone who isn’t like them or isn’t using the same drugs or isn’t the same age. 

I think that through my role, really, I encourage them to consider their experience as meaningful, you know. And that allows them to see another side of the story, because for some people, it’s the first time in their lives they’ve been told it’s something positive, you know, a kind of expertise. Whereas they’ve always thought of it as the most difficult period of their lives, a time that taught them nothing. You know, they’ve often experienced a lot of judgment and rejection from their own family, you know, from their job. They’re homeless, they’re in a really tough situation, and then they realize for the first time that they have rights. There are a lot of users, you know, there are a lot of people who want to claim these same rights. So that makes community solidarity a challenge, but it’s not impossible. I see now – and it took me awhile – that it’s something that builds up gradually, but now there’s a good solidarity and a respect for the experience of others, no matter where they come from, and when someone even more marginalized than they are joins the group, they get an unconditional welcome. So it’s even more beautiful, you know. It’s a worthy challenge, I think, that it’s a long-term thing, something to be achieved in the long run, it takes patience. You know, solidarity within a group doesn’t happen in a single meeting. They come because they know it’s an opportunity to get together with other people with lived experience, but they don’t necessarily know where it’s headed. 

In order to help people who use drugs, you have to adapt a range of services for a range of people. The same goes for access to substitution therapy, now called opioid antagonist therapy: people aren’t offered many choices, if they’ve tried methadone and it didn’t work, if they’ve tried Suboxone and that didn’t work either, what can we offer? What can we offer a person who’s decided to take a safer approach to their substance use, who’s seeking treatment as a positive alternative for their survival and their health, and who voluntarily puts aside the risks of using a contaminated substance, but who finds themselves with no other choice than to repeat a treatment that doesn’t meet their needs? Treatment restrictions can have far more dangerous consequences, especially with respect to the unsafe supply of substances. Although doctors can prescribe medical heroin, which could be considered access to a safe supply, very few do. Because, let’s face it, these days, when you get your drugs in the traditional way you’re not talking about a safe supply. You’re at high risk of using a contaminated substance. Not to mention the conditions, not forgetting the conditions related to substitution therapy, the whole model of reward and punishment, it really doesn’t meet the needs of the person who is using. In fact, the person has to go to the pharmacy every day for safety and supervision purposes. The pharmacist will make sure that the person actually takes their medication properly, so there’s really a mouth check. The person has to take urine tests. At any point, have we taken the time simply to ask the person what they need? If the person’s urine test comes back positive, ultimately they can be cut off from treatment and lose the so-called privilege of getting a prescription for two or three days’ worth of medication so they don’t have to go to the pharmacy every day. We talk about patient safety. I see the opposite, because when you deprive someone of the treatment that person wants—and you have to understand that when they go for treatment, they may already be having withdrawal symptoms. So they’ll wait until morning to go for treatment, but what about a person who’s experiencing withdrawal symptoms and who’s been cut off from treatment—well, where are they going to go to get supplies? In terms of safety, there’s nothing less safe than that. It pretty much guarantees that they’ll go get a fix in their familiar environment instead of seeking treatment. There are people who use while they’re in treatment – it’s a fact. I think we have to start from there. Because if we don’t focus on what the person needs, well, we’re jeopardizing their safety. 

People undergoing treatment often face judgment even when they go to the pharmacy. Some pharmacies require people on methadone or Suboxone therapy to go through to the back. That’s quite something for them, being made to feel different. And I ask myself, how do we explain that people who have a prescription for morphine are free to buy their pills in considerable quantities and take them home without ever having to take a urine test, and without necessarily having complete information about what is prescribed? There’s a real split between the two, and don’t think the people going for treatment don’t see that. You know, they feel like they’re being monitored, and it’s hard for them, feeling the judgment of the pharmacist every time they show up to pick it up. And asking someone to pick up a prescription every day, that doesn’t take the person’s experience into account. When you’re living in chaos, it’s not easy to stick to a routine. You know, it takes a long time to get there in the morning, and then you have to wait. Getting there in the morning doesn’t necessarily mean you’ll be the first one seen, and it happens, you know… people have told me they wait much longer than others for their treatment. For me, that’s really a big gap, because I think we should offer the person diversity, choice, and support when it comes to treatment, there are people who get put on the treatment without necessarily knowing what it really is, without being warned that they’ll experience withdrawal symptoms every time their dose is reduced. There’s a real need for support and information for people who want treatment. There is also the fact that, well, we can prescribe medical heroin, but very few doctors do it. So that’s not an option either. I know there are studies on injectable treatments, but we’re not there yet. You know, it’s harder, but when you consider that people are using unsafe substances and dying as a result, it’s important to think seriously about changing that, because we’re talking about people who are motivated to seek treatment. These are people who have already come to that point. We’re not talking about people who aren’t interested in treatment. They are at that point, they want it, but they don’t have the information, they don’t know how it works. They feel unsupported, they feel judged at the pharmacy. As far as I’m concerned, this is a big problem. 

The stigma attached to substance use, and by extension to substance users, is probably the biggest barrier in our work. Yet we all know that substance use is everywhere, you have to forget the image of the person injecting themselves in an alley between two dumpsters. Stigmatization, people who use face it every day, and even those who quietly leave that environment still experience it. It’s very discouraging, you know, to make some progress, to stop using, and still feel you’re being judged by people—family or even, you know, the police, the hospitals. There’s a sort of loss of hope in the person… It’s difficult when you make the journey, and you end up, you know, recognizing that “I did it,” yet you feel that people still look at you the same way, that you’re still perceived as someone who uses drugs and who is problematic. That’s just about enough to make a person want to give up. Fortunately, I’ve seen many who didn’t go down that road, but decided instead to defend their rights, but you have to realize that  a person who’s stopped using and is on the road to recovery is not necessarily the strongest person in the world. It’s still a fragile time for the person, and the way people look at them carries a lot of weight. Stigmatization, you know, we’ve seen it, is being stopped and searched as you cross the street, while other people cross the street and don’t get stopped. It’s also going to the hospital with an injection-related abscess and being treated by the staff as if you were contagious, and dangerous. It’s going to the pharmacy and having to go through to the back; it’s being told “you just have to stop, it’s a matter of willpower;” it’s being labelled a troublemaker. Sure, using when you’re homeless is a lot more visible, but do we really try to put ourselves in that person’s shoes when we find it personally upsetting? 

People who are using face discrimination on a daily basis because of their social status, and from different sides, like the justice system, the health care system, the welfare system, their family, their friends… and it can even be at the grocery store, it’s literally everywhere. 

When you’re in the business of advocacy, you know you’re not always going to be in public favour. We’re dealing with several issues. We’re talking about solutions, and they’re not necessarily the solutions that the average person would come up with. That’s the most difficult part, I would say. The current system is prohibitionist, and by criminalizing drug use it has created a judgmental atmosphere that infantilizes and stigmatizes people who use drugs, because they are perceived as a burden or a threat. I think we really need to change our perspective, both individually and collectively, and educate ourselves not only about drugs per se, but also about the harm reduction approach, which we don’t often see but which has shown the most significant results in terms of health promotion and implementation of safer practices for overdose prevention. Right now we’re in the middle of a public health crisis; people are dying, it’s literally a matter of life and death. Behind the overdose statistics that we see… it’s not just numbers, you know, it’s people, and, especially, it’s mothers, fathers, aunts, grandfathers, friends, colleagues, people who may have been closer to you than you think. The most important message, I think, is that no one is safe. We all have someone close to us who’s using, whether we know it or not, but it’s not necessarily problematic for everyone. I think that regardless of whether or not you’re using, you really need to be informed, because it can happen to you too… 

I never thought this job would be easy, but let me tell you, when I get home safe and sound I sometimes think about the people who can’t even count on the word “safety.” Those people are in survival mode. I understand the survival instinct, and that allows me to better understand their reality. When you have nothing, what do you do? When we try to put ourselves in their position, the social workers, even we sometimes say to ourselves that we couldn’t do it, but seeing the positive impact we can have on their lives, even when they have absolutely nothing, as far as I’m concerned, that’s my paycheque. 

When it affects you personally, especially in a job like this, it’s hard to,you know, you have a unique relationship with the person. You’re not their mother, you’re not their friend, you’re not a co-worker; you’re the person who helped them with their substance abuse. When this person dies because of their substance abuse, you wonder what you could have done to change that, you know. But the reality is that there was nothing to be done. All we can really do is be there. But sometimes those deep wounds can’t be healed. I’m not a doctor, I’m not a psychologist, and sometimes, despite all the professional help they may have access to, a person’s unhappiness can be really deep and difficult to reach and heal. 

I think that as a social worker, you have to be constantly aware of the emotional work you’re doing. When we’re working with people, we always put up a barrier; we don’t take on their emotions, you know, we’re there to put ourselves in the other person’s place, to understand and support them. Because if we take on their emotions, we’re not helping them. If the person is crying and I start crying, that won’t do any good. But the emotional work, sometimes you’re not aware of the magnitude of it until you get home and realize that you experienced, you know, something that … People come to see us every day and tell us about the darkest moments of their lives. We never let them go, there’s always something going on. So it’s really important to consciously get some distance when you get home. I think, you know, there are some social workers who’ve lost the ability to keep that separate. I haven’t been doing this for 20 years. So I’m still working on that, but it’s really important, because emotional fatigue can set in. You see it a lot among community workers. It happens pretty regularly: the social workers take some time off, then they come back to work. It’s important to look after our mental health. And I think it’s also important to be well supported by your organization. In my organization we don’t talk about sick leave, we talk about wellness leave. It’s a simple distinction, but it changes the way we look at things. We’re encouraged to take time off when we don’t feel right, not just when we have a sore arm or a headache. Because in our line of work it’s important to really be present and ready to listen to the person, regardless of how you yourself are doing and how you might be feeling on any particular day. It’s important. And I think the priority is to ask yourself, “Am I ready to go to work today and to listen to people? Or am I upset about something, or do I feel like I didn’t get a wink of sleep all night and might not be the best advocate for the person?” It’s a job in itself to consider and recognize those limits. It’s something I’ll probably be working on all my life. But that’s part of the job. That said, I do it mostly because I’m intrinsically motivated. For me, it’s a passion. So for sure there are emotions involved. So I have to try to figure out what the emotion is and what to do with it, you know. I find that doing advocacy work is a great way to deal with emotions: to focus on the solution, not the problem … to keep moving forward. It’s fun for me, you know, to keep moving forward and finding solutions, but it’s also nice for people who are beset by problems to believe that yes, there is a solution. And there are rights to be defended, claims to be made. You know, you have the right to be defended because you are a person like any other. That’s what really helps me to channel my emotions, to kind of transform them into motivation, which helps me to advocate on behalf of people who are using. 

Narrator: 

Tragically, the number of opioid-related deaths in Canada continues to increase each year. This crisis is affecting the health and lives of people from all walks of life, all age groups and all social and economic backgrounds. Elsa shares her thoughts on what could be done to help reduce the number of opioid-related overdoses and save lives. 

Elsa: 

I believe we have to hope for change at both the structural and the legislative level, as well as a change in our level of investment in the repressive and prohibitive model, which has shown that none of the measures implemented so far seem to reduce mortality rates consistently. At the moment, the legislative framework for substance use doesn’t allow us to save lives, and more important, it criminalizes a whole community of people. Remember, people who use illegal drugs are still considered criminals in Canada. But are they really criminals? If we label them criminals and put them in jail, are we really promoting their health, are we really helping them? They are people just like you, and if one day you find yourself in a precarious situation and you start using, whether or not that becomes problematic, I’m convinced that you wouldn’t want to be seen as a criminal. I believe we have to act, and not lose sight of the source of the problem. Beyond criminalization, there’s a real problem with the supply of substances. 

Currently, the supply of contaminated drugs, which aren’t subject to any form of quality control, is a determining factor in overdose deaths, and it’s also what allows users to keep using. Why is drug contamination dangerous? Because we think the risk has to do with street drugs, street users, but we know that people who use drugs don’t all come from that background, and if they don’t, they may not be aware of the resources. Basically they could end up, for instance, in a situation where one weekend they decide to use cocaine recreationally (which happens, we all know it), without even considering that it might be contaminated, without knowing that there are organizations distributing test kits to detect the presence of fentanyl. So they’re at risk of overdose, and they may not have the information they need to avoid this kind of situation. If I ask you this: If you use twice a year, have you thought about having your naloxone kit with you? The supply of contaminated drugs and the criminalization of this drug use put you at risk of overdose and label you as a criminal. We need change, and fast, because the number deaths is now in the thousands. 

I had the immense privilege of working with someone whose journey amazes me to this day. I watched them grow and recognize their strengths, through all the opportunities for involvement they had. The truth is that this person taught me a lot about myself. Considering the sheer weight of their experience, the tears they shed when they shared their story with me, it’s impressive to see how adaptable human beings can be in survival mode, and how, too, they can recover. Today, this person draws on their experience, their expertise, to advocate for people who have travelled a similar path. I think the important thing here is that there’s hope in every story… you just have to find the positive in the details, because if we don’t believe it ourselves, we can’t help the person achieve self-worth and self-trust. It was probably through that person that I learned the most. 

Narrator: 

Problematic opioid use is devastating Canadian lives. The numbers are tragic and staggering. These are the stories behind the numbers. This crisis has a face. It is the face of a friend; a co-worker; a family member. Meeting those eyes, and seeing our own reflection is the first step toward ending the stigma that often prevents people who use drugs from receiving help. To learn more about the opioid crisis, visit Canada.ca/Opioids. 

This audio series is a production of Health Canada. The opinions expressed and language used by individuals on this program are those of the individuals and not those of Health Canada. Health Canada has not validated the accuracy of any statements made by the individuals on this program. Reproduction of this material, in whole or in part, for non-commercial purposes is permitted under the standard Terms of Use for Government of Canada digital content.