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I have experienced structural stigma when trying to seek help and intervene with my disorder by not having proper health care measures put in place, like withdrawal support services and rehabilitation centers. There were counseling programs available, and I was connected with a psychiatric nurse that had been working in the field for many years. Once a bed was available at a treatment center, I found out I was expected to go through withdrawal and abstain from substances for 7 days prior. I felt defeated and that I was a failure already because I had tried so many times to do just that (abstain), and the system offered me no support or resources to do so. This was like telling me, yes, we will help you but only after you maintain the very thing that you are seeking treatment for in the first place. After years of use and struggle, I also succumbed to self-stigma by believing that I did not deserve proper health care or resources. My internal dialogue often was very mean to myself saying things like… “May as well not even try to quit, everyone says it is impossible anyways” or “I’m better off dead than hurting my family more and more”. However, after being supported by various individuals including my parents, doctor, and friends, I received the care and compassion that should have been readily available publicly. Now living as a person with lived experience I still see that social stigma is normalized with how people who use drugs are portrayed in media, only showing visual pictures of unhoused persons, needles, and people who are unkempt. For me, I hope that people can see that people who use drugs are people first, who deserve understanding and public health care services like everyone else.
Deirdra T-J
Example of accidental withdrawal - One hot summer day, I was outside gardening which caused me to sweat. I didn’t realize the Fentanyl patches I was wearing had accidentally fallen off. I began having so many symptoms and I didn't know what was happening to me. I only realized after 8 hours that my patch had fallen off and been lost. I put on some new ones, but I was not functional for 2 days - it was my first experience of ‘cold turkey’ withdrawal. Since that day, I constantly fear accidentally losing my patches again and going through the same experience. Feeling of insecurity at the hospital - As a patient experiencing opioid treatment, I am always worried about being at the hospital. This is because living with a chronic disease and being on pain medication is challenging to manage. It is hard to have confidence that a new medical professional will understand the extent of my situation. Unfortunately, my situation does not prevent me from being sick.
Annie P
Shortly after receiving my liver transplant in 2009, I noticed a toxic relationship between caregivers and patients regarding opioids in general. In the unit I was in to recover from surgery, there was considerable verbal awareness from the healthcare staff to take extra attention to the use of opioids. That was a clear indication to me that opioids were not treated in the same way as the rest of my medication. I thought that my recovery was somewhat stigmatized when it came to pain. Days later, I started developing a form of anxiety in regards to my opioid medication. I asked to be seen by an addiction specialist, who surprisingly didn’t give me the same self-guilt speech about opioids that I had become used to hearing. Since that time, it’s become clear to me that there is excessive prevention in regards to Opioids Use Disorder (OUD) for patients who are experiencing pain. Often, that prevention can be counterproductive and leads the patients to worsen their condition. From my experience, I feel there could be a form of unconscious self-medicated compensation when you’re too careful – anxiety about developing OUD could lead you to under-medicate yourself or to unconsciously over-medicate yourself. I call that “reactance”, a psychological phenomenon. It’s a hard debate: on one hand, we don’t want to penalize patients who deserve to be treated. On the other hand, the risk for patients to develop an OUD is real - what is the right balance?
Kevin Lebrun
I have experienced every form of stigma across my many years living with a chronic illness. The stigma I experienced early in life was difficult to deal with as it affected how I assessed my personal strengths and limitations heading into adulthood and convinced me that I would become less than my potential. During a 6-year hospital stay, I was prescribed opioid treatment. The stigma I experienced during that time made me feel as if I had become someone else completely. I redefined myself to match the description offered by those caring for me. I was no longer educated, autonomous, determined, passionate or caring. I believed what they said about my lost potential. I no longer felt I had a place in my community, my family, nor in my own life. After I was discharged from the hospital, I fought the undertow of stigma and insisted on reclaiming my old self. I still sensed my potential, and I knew I was not an addict – I was me. My stubborn and rebellious spirit compelled me, I had to claim myself back, and I had to prove others wrong. Since that time, I have learnt a lot about opioids, stigma and becoming a true partner in my own care. I have learned to filter out the judgments of others and focus on addressing my need for symptom reduction. As an informed patient, I know both the risks and benefits of opioid use and how it may apply to myself uniquely at any given time.
Rona F
I have been living with chronic pain since childhood. I was first prescribed opioids as a teenager following multiple severe sprains and a knee surgery. Into my late teens, I was prescribed opioids for migraines. In my 20’s, opioids were prescribed for early-onset osteoarthritis. I found out in my 30’s that I had a genetic condition explaining all my injuries and chronic pain. Over the years, I’ve had to take a lot of different pain medications and I’ve tried most types of opioids due to my genetic condition. I was never one to take opioids for fun, just in case, nor even at the first sign of pain. I never drank alcohol, never smoked, and never used recreational drugs. More than anything, I never wanted to take anything that would make me feel like I wasn’t in total control of my mind. I never once took more than prescribed and usually I took less than prescribed or even not enough or too late. Despite this, I came to learn that in the eyes of many healthcare professionals, I am guilty of being an addict until proven otherwise. I learned that even though I have plenty of proof otherwise, it isn’t enough. So many times, doctors would immediately state that they would not be prescribing me anything for pain, even though I was seeking medical care for symptoms unrelated to pain reduction. I’m now in my forties and I no longer take opioids, yet I continue to be stigmatized by physicians.
Annie-Danielle Grenier