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My experience with stigma within the health care profession


I would like to start out by thanking all the fantastic health care workers. As a recovering person with diagnosed concurrent disorders – having both addictions and mental health issues – I have seen the challenges and abuse often faced by doctors, nurses, counsellors and support staff working within the healthcare system. This article is in no way meant to hurt, blame or take away from the great and (hopefully) rewarding work you do, but to educate and open a dialogue about the impact of the stigma that we addicts/mental health clients sometimes face.

I’ve been an addict and person with diagnosed mental illnesses for about 35 years.  I want to share a little of how stigma in the health care system has affected me first hand.

Throughout my life, I have encountered stigma in many ways – either directed at me or at others. Now, sadly I’ve come to accept that kind of behaviour from society, and while there is no excuse, I try to rationalize that ‘maybe they just aren’t informed.’  I have a much more difficult time, however, accepting this kind of abuse from professionals in the health care system.  As shocking as it might be, I’ve learned that we are not always safe from others’ judgement, and there are times that it can even come from the very people who have devoted their lives to helping people.  

I’ve had several negative encounters at hospitals but I would like to share two occasions I’ve had with one particular hospital.  

In 2006 I was living on the streets of British Columbia.  It was November and getting cold out. I was hurting, had had enough of the drug use and was tired of living in the cold. I hadn’t used in the last 24 hours and was craving real bad, but I knew I didn’t want to use anymore. I was desperate, out of hope and suicidal. I decided to go to the hospital to see if I could get some help. I was put into an open area while I waited to be seen by a doctor. I was clearly upset and broke out in tears many times, yet I was given no privacy. The shame of people seeing me like this was at times unbearable. After what seemed like an eternity, I was finally seen by a doctor. I explained, through tears, that I was an addict living on the streets, was suicidal and I wanted help.  His initial response was not to express empathy, to congratulate me on my decision to seek help and make a change or to assure me of the support I would surely be given, but instead his first question to me was “how have you been supporting your crack habit?”  I was stunned! What in the world has that got to do with me getting the help I need? Did he see me as just a thief, beggar, or a drug dealer? I could see the distain he had for me in his eyes. This was very hurtful.

He hurried away quickly, apparently on route to find a social worker to work with me, and I was left in this open space crying and visibly distraught.  I remember at one point, looking up as I waited, wishing desperately for a reassuring presence and seeing a nurse walk by.  I can still see the look on her face. It was not of sympathy or empathy, but pure disgust.

Another hour went by before the social worker made it down to see me. I thought “great I’m going to finally get some help.” I thought for sure since I said I was suicidal I would be taken to the psychiatric ward, a place where I believed I could finally be provided with the safety and support that I needed to get back on track, but that was not the case. The worker said that she was very sorry, but the doctor refused to admit me.  That was it.  She had already called a cab, it was on its way, and there was a bed set up for me at the local shelter. Once again I was shocked that I didn’t get the treatment I needed.

I did go to the shelter that night, but I was back to using the very next day. That open window of wanting to get clean had closed, and led to two more years of using and two failed suicide attempts.

I carried on the best I could and to help with the pain, cold and shame of homelessness, I started using opiates as well. I found it helped with the cold. When you’re nodded out, you don’t notice the cold or the stares as much.  It was because of the injecting that I got a painful infection on my arm. I put off going to the hospital, as the shame of my last visit was still fresh in my mind. I was hoping the infection would heal itself. It didn’t. It got worse and worse to the point my arm from my hand to the shoulder was three times the size it should have been.

I was finally convinced by a couple of friends to get to the hospital, so I went. Once again my fears came true. Turns out the nurse who had looked at me in such disgust all those years ago, was the very one on duty that day.  She may or may not have remembered me, but she had left a lasting impression. Even though the emergency room was empty I was still left waiting.

After two hours of waiting, the effects of my last morphine tab were wearing off and the pain was setting in. I decided to approach her. She told me they were very busy and that they would get to me as soon as they could. I knew this was a lie and confronted her on it. Her response was “I’m not the one who did this to you. It’s your own fault and you’ll have to wait.” WOW! I had had enough and went to the administration office to speak to a boss. And within ten minutes of speaking to her, I was being looked at.

I was hoping I wouldn’t get the same doctor as last time and was pleased to see it wasn’t. I was unsure what to expect from this new doctor but soon after talking to him I was in blown away, and this time for the good. He was great! He was kind, considerate and made me an offer I was waiting years to hear. He asked if I had had enough of this life style. I assured him I had. He offered to admit me, keep me on opiates until my arm healed and then help me withdraw. In the meantime he would set me up with an addiction councillor and have a psychiatrist come see me.  During the rest of my stay I was treated with kindness and respect. I felt like a human again and it made all the difference. I was finally getting the help I so needed. I started on the path that led me to where I am today. I’m off the drugs, I have a stable home, I’m paying my bills, am meeting great people and have a caring support system.

I wish I knew that doctor’s name. His kindness, caring and respectful approach to healthcare has helped me turn my life around. I owe him a huge thank you! If not for him, who knows where I would be today. For that matter, if I would be even alive. I try to mirror his approach in my everyday life.

One last example of some of the stigma I’ve personally experience happened right here in Brantford.

I recently went in for an interview where I was applying to do some volunteer work. During that interview I was asked why I wanted to help. I shared the story of my negative experiences at the hospital, and explained that I not only wanted to give back, but to give a voice to people like me.  One of the interviewers asked me if I was being rude and belligerent to the hospital staff, as she has witnessed this sort of behaviour before and assumed that that was the reason I was sent away. Now focused on her negative opinion of behaviours exhibited by addicts, she then went on to vent about the hassles she experiences because of “the CRACK HEADS [living] below me.”  I sat there shocked and taken aback.  She noticed the look of shock on my face and quickly apologized, however, the damage was done.  Once again, stigma has reared its ugly head and I felt that shame all over again.

I know the abuse and the stress the job can have on healthcare providers. I really do! But please try to keep in mind that we are stricken with an illness and just like most illnesses, we have symptoms. Sometimes the need to want to relieve those symptoms can be overwhelming for us. Being dope-sick is a miserable and painful experience and yes, we may beg or try to manipulate for drugs, and sometimes we may act out or we may be having an episode due to our mental illness. We may even be abusive. In times like these, we need to be dealt with firmly but fairly.  Keep in mind, would you be mad at a cancer patient for having symptoms?

The Canadian Medical Association is offering a Continuing Medical Education Stop the Stigma learning module for doctors (hopefully soon there will be something for all healthcare workers). I would urge you all to please find the time to watch the learning module – you can find it on CMA’s website.  The messages given are encouraging health care providers to be aware of the impacts of stigma and the small things you can do to combat it by doing things like being aware of the language used to describe your clients, and to not be afraid to give a kindly reminder to your co-workers when you witness stigma.

I’ll leave you with these final words.  No matter how difficult we can be, remember that we are sick and at times, have what you may find to be unpleasant symptoms. Please try and remember we are someone’s child, parent, grandchild or grandparent and should be treated like we are one of your family members. Remember why you first chose this profession, and you too can be like the doctor that gave me a chance and make a difference in someone’s life. 

Randy Roberts is a volunteer, a mental health and addictions advocate and a supporter of #StopTheStigma campaign. Follow Randy on Twitter @RandySRoberts.

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14 comments

  1. Carolyn Thomas

    Randy, thank you so much for this powerful reminder of how poorly many health care systems are set up to offer care (in the true sense of the word) to those marginalized with addiction or mental illness. Examples of the disdain and cruelty you experienced were appalling. I observed similar reactions firsthand during the years I spent working with the Sally Ann and running a street outreach program feeding the homeless.

    %featured%Mental health issues continue to be a barrier to good care – and even for those who are not homeless, who do have supportive families and have received far more help than you did. %featured%We also seem to have an internal sense of denial and shame around our own mental health issues.

    We wouldn’t hesitate to ask for medical help for a broken arm, but the stigma of mental illness keeps even those who are not marginalized from seeking help. Incidents of severe depression following a heart attack, for example, are well-documented (Mayo Clinic cardiologists estimate that up to 65% of survivors experience depression, yet fewer than 10% are appropriately identified). The deep personal shame of admitting mental health problems may indeed be part of this tragic reality – see more at “I’m not depressed – and other ways we deny the stigma of mental illness after a heart attack”: http://myheartsisters.org/2010/09/07/heart-attac/

    Thank you Randy for sharing such an important message here, and good luck to you in your advocacy work. You are heroic in my eyes.
    regards,
    C.

  2. Paula

    Thank you for this reminder. An excellent way to start my day and be mindful of the patients I may encounter today.

  3. Ada Giudice-Tompson

    %featured%Randy thank you for sharing your experiences and reminding us of the terrible hurt and suffering that stigma inflicts.%featured% Each one of us should be mindful of our language and our actions, but also important is for us to step in when we observe such demeaning behaviour. I believe that marketing often fuels stigma in order to promote products. We need to be aware of myths that perpetuate stigma. We can all do better.
    Congratulations Randy, what you have accomplished is no easy feat. Your experience will help so many others.
    Thank you.

  4. Richard Clamp

    %featured%I know this road, and I have seen it, but to traverse it with a mental illness is an astounding accomplishment. %featured%My hat is off to you Randy. Keep spreading the good word, because your experience holds great value in the form of hope for others who suffer, and insight for those who fail to see.

    All the best,
    Rich.

  5. Richard Clamp

    Kira,
    While I appreciate your situation, and your frustration, and agree with everything you said, I hardy see how you can compare a slightly diagreeable discussion (or even a complete blow out) with an anesthesiologist, with being fired out the door of a hospital, on the brink of death, because you were say, cover in your own bodily fluids, and bleeding at the finger nails. I may be exagerating the situation, but from what I have seen, I doubt it is by much, if at all. We are talking about someone crawling in, barely under their own steam, and begging to be saved, not only from their addiction, but from themselves. The doctor who refused to treat him, did so because they thought the person before them was loathsome, digusting, and deserved whatever they had sown, instead of as a human being, in a state of absolute dispare, on a scale I doubt many can even grasp. To be honest, it’s astonishing he is even still alive. In the three years I have been in recovery, I have lost at least fifteen friends and peers, because they simply didn’t make it. What we are talking about, is a hole from which a huge percentage never emerge. Jails, institutions.. and death are what await most. To turn this man down, and send him to his likely doom, was bordering on criminal, and actually, given the hippocratic oath, perhaps was. Now that my dear, is what a stygma is…

  6. Kate S. RN

    Thank you for sharing your experiences, Randy. I am an RN working in a facility that aims to incorporate harm reduction in our approach to caring for persons with physical and mental health experiences often in addition to addiction experiences.

    Recently, I had a conversation with one person who said that our facility rarely seemed to differentiate between one who was addicted to drugs and one who had used drugs occasionally, but did not identify as an addict. Any substance found in a urine drug screen merited discussion by the health care team and referral to a substance-use professional.

    I also realized that this person was talking about stigma. Whether as one who identifies as an addict or one who uses substances occasionally, persons in our care are feeling labeled and judged for their actions – the exact opposite of what we aim to achieve through a harm reduction approach.

    This discussion reminded me of the pervasive stigma that surrounds substance use of any kind in health care. I agree with you that change in the way that we understand addiction and substance use is necessary, however difficult it may be to alter longstanding perceptions and attitudes of health professionals. Every interaction counts.

  7. Helen

    I too had the exact same thing happen to me here in Brampton, Ontario. After dialing 911 with hopes that my cry for help would be answered, I also was taken to the hospital, left on a gurney out in a hallway with two cops standing over me. They said it was for my own safety. Seeins as i, at that point, only wanted to die, and to end my suffering from alcoholism and drug addiction. Hours past they then locked me in a small room as i awaited the arrival of someone….anyone. Then the door opened, and i began to cry with relief that i would now be safe. That wasnt to be though, after saying they would admit me, and then finding out i was under the influence…was sent home !! I honestly could go on, but this is your blog, not mine.I just thought id share a bit of one of my same experiences, with the stigma of addiction and mental health. Just for today, I am sober, but whats left now is all the things that brought me to addiction to begin with…….and still no help from the medical field…just we’ll call you etc, etc, etc…Thanx for listening Randy !!!

  8. T. Kitchen

    Randy;
    I have read your article “When will we Matter” and your experiences with stigma and commend your recovery. I just finished watching Advocate T.V. and found your idea of providing support for recovery in the community and I would love to volunteer in any way that is needed. As someone with lived experience with a concurrent disorder as well as having an educational component with Concurrent Disorders through Mohawk College and a diploma in Social Services, I would love to give back.
    Feel free to reach me,

  9. candis

    Randy, thanks for sharing and thanks for advocating.

  10. Charlene

    Thank-you Randy for sharing your experiences. Congratulations on your effort and success in recovery to get your life back on track! As an advocate and street outreach volunteer, I have experienced and witnessed the very stigma you described. It troubles me each time I hear such stories because stigma still lurks, despite all the mental health awareness campaigns. Until governments impose a zero tolerance law regarding stigma, there won’t be accountability. Thankfully, there still are people, who truly want to make a difference in the world and one was the doctor, who listened to you and treated you with respect and dignity and made recovery possible. From your story I do believe he saved your life! Thank-you also for sharing the continuing education links. I hope readers will take the initiative to access this training and make it mandatory to all staff.

  11. Gerry Nealon

    The #Stigma around Drug use is opposite of what’s needed to help S.U’s.
    What really counts is to see genuine ,caring Health Pros.use their Empathy .
    Clients are human. If treated humanely,better outcomes will be reached.

  12. Patricia

    Iam so very proud of you …love you always your baby cousin

  13. Bernardino Surita Sr.

    Co-Workers. That is an encounter at work for 8 hours 5 days a week that don’t wish to go through again, The abuse I went through is no wonder Am still alive, I would of rather go to war for them then to go through what they were doing to me. And the sadist thing was that I also went through my School years with the same Stigma. When I got married was the best thing to happen to me and latter on with 2 kids and now we have 5 Grand children.

    GIVE US HOPE TO LIVE.” Life is not that Hard for you. “

  14. Lee

    Thank you so much Randy – this was powerful and well written, and it was heartbreaking and unfair that you were kicked when you were already down. I believe in you and I believe you are making a difference.

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