I am going to share a few experiences from the field, telling the stories of individuals I have had the pleasure of meeting in the last nine or so years that I have been involved in this work. I hope it provides a unique insight into the lives of individuals living with substance use disorder (SUD), and the impacts of living with that medical condition. My hope is that by telling these stories, shining a light on the egregious mistreatment, discrimination & for some,downright medical neglect, will reduce the consistent barriers and overall harm(s) people living with SUD experience while on their journey of recovery/remission from SUD/OUD.The individuals who were brave enough to allow me to share their experiences with all of you will remain anonymous to protect their confidentiality. First, I thought I’d qualify a bit by sharing one of my experiences facing judgment, shame, and discrimination within a self-help community.
My StoryI recently celebrated 10 years in remission from opioid use disorder (OUD)! For the first 7.5 years of my journey, I had been extremely active in a well-known self-help group, I shared my experience, strength, & hope as part of the H&I committee, which is a program that brings members of the self-help group to treatment programs and inside jails/prisons to share their journey of recovery & stories of hope. I actively worked with a sponsor, writing the twelve steps, sponsored women, guided them through the steps, and held just about every trusted position one can hold within the organization. The thing is, to hold most (if not all) of those positions, to sponsor those women, to bring my message of hope to other individuals inside hospitals & institutions (treatment settings), I had to lie, or at least felt the need to omit a very significant part of my story of recovery. Because of the stigma associated with the use of Suboxone to treat OUD, I did not feel safe sharing that part of my story.Secrets Keep You SickSecrets eat at you, they will grow into shame and guilt, and if you are not careful, may result in a setback/relapse. Luckily, that wasn’t part of my story. But the loss of my soulmate/best friend & the father of my son gave me the strength, to be honest with the friends who felt more like family, about being on a medication used to treat OUD, and those relationships changed. All of them. Talk about the feeling of shame and abandonment. But today, I live authentically & have friends who love me unconditionally, regardless of what medications or methods I use to continue my journey of recovery. Today, I get to use my experience to encourage others to live out loud, without shame. I like to say my biggest objective in this work is to provide a safe space allowing individuals to come just as they are, feeling safe without fear of judgment.
According to an Online NIH Journal, titled “Overcoming medication stigma in peer recovery: A new paradigm”, “This stigma has particularly been expressed as an issue among NA groups. NA states in its official literature that although all individuals should be welcome to attend meetings, those who use medications are not yet considered “clean” and groups may choose to prevent individuals on medication from sharing experiences or leading meetings (NIH, 2019).”
“L’s” StoryA woman I’ve known for many years shared many of the instances of shame, stigma, and discrimination and how its impacted her recovery journey. “L” shared with me a time she went to the emergency room with a torn ligament and another type of injury of the knee. “L” reported that before she even saw a doctor, she was told by a nurse, “we cannot give you narcotics!” Here’s the thing though, she hadn’t asked for narcotics, she wouldn’t ask for them, because she is on Methadone (medication to treat opioid use disorder). We all know the stigma associated with medications used to treat OUD. “L” was discharged with nothing but a list of local specialist doctors to call. It would take several more humiliating trips to the emergency room and many appointments with primary care and specialist providers before “L” found any relief for her pain. Medical professionals if you are reading this, PLEASE, do better.
“B’s” StoryMeaningful employment is another significant and continuous barrier that people who use(d) drugs face. “B” has been in remission for nearly three years, and has had no additional involvement with the criminal justice system in that time, yet continues to run into roadblockafter roadblock while trying to find employment. For instance, “B” has completed all the relevant qualifications and certifications courses to become a Recovery Coach, but as soon as a potential employer runs a criminal background check, they are excluded from the hiring process.Remember, this is to work within the recovery community, if they cannot get hired here, then where?
Peer Work’s Where It’s AtWe know peer support works. It is a very effective method for engaging at-risk and underserved population(s), especially those living with substance use disorder. According to a Substance Abuse and Mental Health Service Administration (SAMHSA) study, titled, “Value of Peers”, peer recovery support provides the following, “improved relationship with treatment providers, increased treatment retention, increased overall satisfaction with the treatmentexperience, improved access to social support greater housing stability, reduces emergency service utilization, reduced re-hospitalization rates, reduced substance use, and a decrease of criminal justice involvement (SAMHSA, 2017).”If individuals with lived experience with substance use disorder can offer all these benefits to people currently struggling, why is their past criminal justice involvement held against them? We know people who use drugs often commit crimes to support their substance use. When individuals stop using and engage in the treatment, in most cases the criminal acts stop too. Program Directors and Human Resource Personnel must keep this fact front of mindwhile seeking candidates to fill peer recovery support positions.
“D’s” Story“D” is a participant of mine who reported he had gone to a local emergency room in opioid withdrawal, requesting to be started on Suboxone, which has been promoted in the addiction field as an option at this hospital. Not only did this individual NOT get to start treatment for his OUD, but a nurse laughed out loud and reportedly said, “We don’t do that here, I can give you a Tylenol.” He was discharged without any assistance for his medical issue, whichOUD, is, in fact, a well-documented medical disorder. This individual was not only discriminated against, but he was also humiliated, and most tragically, he was discharged with not even a list of resources. Luckily, he found his way to Perception Programs’ Mobile MAT Van and was able to start treatment for his OUD and begin his recovery journey.
Do No HarmThese stories are the rule, not the exception, when regarding how people with substance use issues, even those in remission, face mistreatment, and stigmatization, and often are either dismissed entirely or treated as if they are undeserving of resources, services, and support simply because of their medical disorder. My goal is to continue to shed light on this issue, increasing the community’s awareness of the problem, which will hopefully put pressure on institutions, organizations, and other treatment & hospital systems to ensure ALL individuals they serve receive the dignity & respect they deserve. The overarching goal, above all else… do not harm.
If you or someone you know may benefit from any of the services offered on the Mobile MAT Van, please contact Jess @ 860-336-9412. We can also be found on Facebook, Instagram, our website, or by calling any of our three offices.
Krawczyk, N., Negron, T., Nieto, M., Agus, D., & Fingerhood, M. I. (2018).Overcoming medication stigma in peer recovery: A new paradigm. Substance abuse, 39(4), 404–409. https://doi.org/10.1080/08897077.2018.1439798https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6087684/https://www.samhsa.gov/sites/default/files/programs_campaigns/brss_tacs/valueof-peers-2017.pdf