Sign up for alerts

Spring 2010 | Vol 13 No 3

Focus

“It’s the feeling of being silenced”

What consumers say about stigma

 

Stigma and discrimination can be overt, unintentional, even well-meaning. CrossCurrents asked consumers of mental health and addiction services across Canada to tell us about their experiences of stigma and discrimination by health care providers. We asked: Have you ever experienced stigma and discrimination by a health care provider? Have you ever had an experience where a health care provider has done a good job of fighting that stigma and discrimination?

Here’s what consumers – some of whom are also health care providers – told us:

---

I’d like to share my experience of two different health care providers responding to the same situation – one highly stigmatizing, the other just the opposite. It shows how simple it can be to end stigma.

After a long battle of trying to find appropriate medication for severe depression, I finally “gave up” and “gave in” to the suicidal ideation I had been experiencing and seriously overdosed.

When I was admitted to the intensive care unit, the first words of the ICU nurse who eventually came to see me were, “You may wonder why it took me so long to come and see you. We spend all our time helping people who are dying and want to live; we really don’t have much time for people who want to die.” All she did was confirm my belief that I was so worthless that the whole world would be better off without me.

After surviving the most gruelling night of my life, I was feeling so full of shame, but I knew I would never attempt again. A different ICU nurse came in and asked me what had happened. I sighed, and told her that I had had two post-partum depressions and wanted to have a third child and “get it right,” but I miscarried at 17 weeks. The nurse responded, “That must have broken your heart.” I said, “Yes, my heart is truly broken.” It meant so much to me that she actually understood.

She then said, “You’re going home today. Would you like me to wash your hair for you?” That simple offer of help as I went to “face the world” after what I had done suggested that maybe I did have some dignity and worth after all. It did so much to lessen the stigma and shame I felt. That was more than 10 years ago. I don’t know her name to thank her, but I will never forget her kindness.

Ottawa, Ontario

---

I would like to share an experience I had 10 years ago: I’ve struggled with depression for a long time now. I can say with confidence that I’d be closer to wellness – if not already there – if it weren’t for an incident with an ER nurse when I was 17.

I had been dealing with depression by cutting, and one night had cut too deep. I lived in a small town where everyone knew one another, and I was afraid of being judged. But I knew I had to go to the hospital. After a bit of panicking, I went to the ER. While waiting in a room to be stitched up, the nurse who registered me made some comments to another nurse right outside my door. She told her colleague that she knew my parents were good people and were well off, so I must just be trying to get attention. She said that it was pathetic.

The ER doctor noticed and right away came over to tell her to find somewhere else to be and shut the door, but the damage was already done. To this day, I have a fear of going to the ER, even during an incident where I felt like my chest was being crushed and I was in excruciating pain. Even in that state I could not bring myself to face a nurse who might treat me like it was my fault.

When I see my GP about my depression now, I downplay everything, afraid that I’m “just trying to get attention,” despite my doctor’s reassurance that this is a disease, and that like any other disease, he takes it seriously.

Words are incredibly damaging. No reassuring words that doctors, psychotherapists or nurses have spoken to me since have undone the damage of that one ER nurse.

Toronto, Ontario

---

I was seeing a psychiatrist in a hospital outpatient psychiatry clinic for cognitive-behavioural therapy to help with anxiety and depression and was responding well. We had an eight-week contract, and by week 5, I had completed my original goal and was feeling confident and hopeful. I told my psychiatrist that I now wanted to work on my issue with alcohol. She put up her hand and said, “No, I don’t do addictions.” I said, “But I know this will work. See how well I’ve done on my first goal? Please can’t we just look at dealing with alcohol as my next goal?” “No, we don’t deal with that stuff here,” she replied. “You have to go somewhere else for that.”

I didn’t reach out again for help for another year. In that year I almost lost my marriage because my husband couldn’t deal with my binges anymore, and I put myself in many dangerous situations, including alcohol poisoning.

I suggest that her response demonstrates a stigmatizing attitude about addictions – that they are different in a nasty way from mental health issues and not worth a psychiatrist’s time, attention and understanding. Ironically, when I did again seek treatment, my addiction counsellor and I did CBT, and I responded very well.

Toronto, Ontario

---

We have a 17-year-old daughter with bipolar disorder who has been heavily medicated since she was 9. We live in a small community where there is no pediatric psychiatry ward at our hospital. Two years ago, after my daughter attempted suicide, we were at our local hospital when a doctor walked into the exam room, threw his hands up in the air and said, “I don’t know what to do.” We never saw him again.

The next morning our family doctor arrived and sent us to a hospital pediatric psych ward in the city. It was fantastic there – great support, great health care providers, but due to limited bed space, we were eventually sent home, where our daughter was admitted to the local hospital’s pediatric ward because that’s all we have. This is when the nightmare started.

I will not deny for one minute that our daughter was not extremely difficult to deal with. They were taking her off of lithium and putting her on a new medication and needed her to be in a safe and controlled environment to change the meds.

The majority of the nurses on the pediatric ward were cruel, thoughtless and hurtful. For two weeks we had to put up with their lack of empathy, lack of understanding and hostile attitudes. Please understand that not all the nurses were like that, but most of them were.

The nurses told me things like:

• We aren’t trained to deal with mental health issues.
• It’s not fair that we have to deal with your child.
• Get your child under control or we will take extreme measures to control her.
• Tell her to shut her mouth or we will.
• It’s not fair that she is taking a bed of a really sick child that could be here on this ward.
• Tell her to put her bed down or we will restrain her (she moved her bed up to the highest height away from the floor).
• Why is she here and why is it our problem.

On more than one occasion I heard the nurses at the desk trash-talking my daughter – so did she.

Our child psychiatrist and our family doctor tried talking to the nurses, and they seemed fine as long as the doctors were around. Their tunes changed when the doctors left.

I confronted these nurses about their behaviour and was met mostly with hostility. A few of them showed embarrassment and admitted they just did not have the proper training to deal with my daughter and promised they would try to be more patient.

rural Alberta

---

It is difficult to describe the nature of the stigmatization and discrimination because it often works in subtle ways. In my experiences, the feeling of being silenced has always been indicative of a form of oppression. There were many psychiatrists who inquired about my diagnosis, before they even asked for my name or age. A number of psychiatrists even refused to take me on as a patient based on my diagnosis of borderline personality disorder. This diagnosis was eventually changed to borderline traits, which seemed to produce less hostility and fear by health care workers. These encounters perpetuate stigmatization and further perpetuate the cycle of self-stigmatization.

Toronto, Ontario

---

I have experienced childhood post-traumatic stress disorder. I was also bullied out of a job that I had held for more than 20 years. The bullying took a toll on my emotional endurance and I felt into a depressive state. I decided to seek help from a psychiatrist. The psychiatrist told me with such an incredible arrogance that what I needed was to find a job. I felt so ashamed, so invalidated and so helpless. After this visit, I fell deeper into depression.

Edmonton, Alberta

---

In 2008 I had an experience that has left me confused and fearful of any emergency department visit in the future. I was transferred from the urgent care hospital to the emergency department of another local hospital with a suspected bowel blockage or gastrointestinal virus. I displayed no hostile behaviour or inappropriate language, body language or threat of any kind.

I was greeted by the emergency department physician with these words: “These two security guards will be escorting you off the property.” No explanation. No treatment. I felt dehumanised and worthless. I’m left with only guesses as to why I was treated as less than deserving. I have a previous history as an I.V. drug user. This so-called drug-seeking was well in the past. If addiction is a disease, this physician’s treatment plan is unsupportable. Criminalising, traumatising, ostracising and then incarcerating someone with addiction – past or present – reduces her potential to achieve the social determinants of psychosocial health.

Winnipeg, Manitoba

---

Recently, I went to a general hospital with physical difficulties as a result of a previous unsuccessful overdose. The triage nurse was compassionate in a non-verbal way. The med student was completely non-judgmental when she took my history. But the attending doctor was downright hostile from the minute she entered the cubicle. She gave me no information on treatment or what to expect. I got upset when she said that she was putting me on a Form. After all, I was there for physical not mental problems. I got angry and asked, Why the Form? The doctor asked why I was angry, to which I replied, “Have you ever been locked up or put in five-point restraints?” She left without a further word. I never did find out what was happening with me or to me. I just got escorted here and there without a word.

Toronto, Ontario

---

One of my first experiences of stigma by a health care provider occurred shortly after I was hospitalized for a severe psychotic episode. The prescribed lithium didn’t manage my moods, so my psychiatrist tried various medication cocktails. I told my psychiatrist that one of the medications gave me acne. He cavalierly said that acne was not a side-effect of the medication. I had never had acne before, so was convinced that it was a side-effect. I learned at the pharmacy that it indeed was and told my psychiatrist. He still didn’t believe me so I asked him to look it up in his medication guide. He slammed the book shut and said, “See, I told you that acne isn’t a side-effect.” I couldn’t believe my ears! When I pointed out his error, he became angry, and said, “Well, it is such a minor side-effect that it doesn’t matter.” In any event, none of the medications he prescribed stabilized my moods, but he insisted they should. Eventually, he accused me of being non-compliant and refused to treat me anymore.

The result was a completely different experience with another psychiatrist. After my first psychiatrist refused to see me anymore, I weaned myself off medication. Eventually, my moods began to cycle again and I was referred to a new psychiatrist. This one was like all psychiatrists should be! In our first meeting, he said, “You are the only person who knows how you feel. All I can do is based on my education and experience, so, if you wish, I will be your technical advisor.”

He acknowledged that I had already tried all the medications known to stabilize mood disorders and suggested that I take the weekend to consider a new experimental drug. I decided to try it and together we developed a treatment plan. Eventually, we finally found something that stabilized me.

rural Nova Scotia

---

I have lived most of my life with mental illness and suicidal ideation. About 10 years ago, I was in the local general hospital and tried to strangle myself. The care aide who found me was very upset. I was sent by ambulance to the psychiatric ward in the city. The local hospital said they would never again admit me.

About five years later, I had severe pneumonia and the GP in emergency admitted me to this same local hospital. The doctor was new and unaware of my previous banishment. When the nurse took me to my room, she said, “I sure hope you are not suicidal because I’m not going to take down the tubing.”

Two years later, I made a very serious suicide attempt. I was in coma and the ambulance took me to the local hospital to stabilize before taking me to the ICU in the city. The next time I visited the GP for blood pressure pills, she said, very accusingly, “You gave us a very bad scare.” She didn’t ask how I was doing, just informed me that from now on, the psychiatrist would prescribe my anti-depressants and sleeping pills and she’d prescribe my blood pressure pills. She does not want to be responsible for anything related to my mental health. The psychiatrist doesn’t know I have high blood pressure and diabetes. As far as I know, neither of them has any idea what the other is prescribing.

If you publish this, please give my location as “rural Saskatchewan” so that if I need the local hospital for a heart attack some day, they might treat me.

rural Saskatchewan

---

I am 47 years old with a bipolar disorder and generalized anxiety disorder with depression. During an emergency, EMS [emergency medical services] did not allow me to finish responding to their questions (I was having trouble forming words and thoughts). They kept asking over and over again without waiting for my response or without even listening when I was trying to give them the answers.

Watch the movie Patch Adams, where Robin Williams plays a doctor who really cares and insists his interns and doctors become “patients” to get that perspective of the health care system and doctors in particular.

Edmonton, Alberta

---

I did feel stigma sometimes while in the psychiatric hospital. The nurses did not come and talk to me a lot, or ask how I was, or try to find out if my stay there helped me. What I think may help patients is a more personal approach from staff.

Regina, Saskatchewan

---

I have been in the mental health care system for over 40 years. When it comes to having a mental illness people judge you and think you suffer from a weak will or lack of self-control instead of realizing that the illness is not your fault. Mental health workers have been just as discriminatory as the public. I have been slapped around, disbelieved, minimized, slandered, overdosed, and had medication withdrawn much too quickly. I do not look at the hospital as a safe place, but as dangerous ground. I try at all costs to avoid it. Until mental health workers rid themselves of their discriminatory attitudes against the mentally ill, the hospital will continue to be a battleground of “us” and “them.” Typically, we are seen as “bad children,” and staff are there to ensure we do not break any rules. Why can’t those who suffer a psychiatric disability just be seen as fellow human beings with as much worth as every other person?

New Brunswick

---

I have experienced many times issues of stigma with “well-meaning” health care professionals. Statements such as, “You will need a great deal of counselling as you fight your demons” are quite negative and insensitive. We as a group of health care professions need sensitivity training around our biases.

Thorold, Ontario

---

I was a freelance writer who made my fulltime living from writing for ten years. During that time I have had two GPs who expressed disbelief that I was working for a living. The first one was a nice man but a bit clueless. My current shrink is actually a GP with some psychiatric training. She has never doubted my abilities, and has always been supportive of my efforts in the workforce. Health care providers should start with an open mind, be willing to support people in their practice who are making efforts and taking risks to enter the workforce. They need to keep in mind that all of us, despite our limitations, have abilities and strengths, and more importantly, dreams and goals.

Dartmouth, Nova Scotia