Lived Experience Not Welcome

An op’ed posted in the Montreal Gazette by Melissa Pickles (what a wicked last name! I would love to see Dr. Pickles!) about how she remains silent about her experience with depression as a resident in psychiatry. She opens up her story about a doctor of oncology that she studied under who was a cancer survivor and everyone knew. Pickles writes,

“This had a powerful effect on his patient interactions: they clearly valued his disclosure. There was a sense that he was more trustworthy, more empathetic, more wise, for having undergone the same life-changing experience.”

Throughout my social work education and work I have seen the power and value of lived experience. Generally, certain services prefer and stress employing individuals with lived experience. Women’s shelters hire women, LGBT organizations hire LGBT individuals, HIV/AIDS groups hire individuals living with HIV/AIDS etc. But our mental health system seems to be the one place where having lived experience doesn’t work for you but against you. Yes, organizations hire individuals with lived experience for peer support and community engagement but what about for higher positions of authority such as social workers, nurses, psychiatrists or even upper management? I get the feeling that lived experience does not exist as much the higher up the chain of command you go (or at least lived experience that they’re willing to talk about).

The view of individuals living with mental health issues is not a good one. Not only is society taught to doubt us, we are taught to doubt ourselves. Our own symptoms are used against us and we are constantly discredited. I would argue that it is the only social sector that does not see lived experience as a valuable quality for a professional to have.

Pickles expresses it perfectly,

“In spite of the fact that I feel my history of mental illness has enriched my clinical abilities, I still worry that it will make others doubt my competence, or respect me less.”

This is not fair. It is unfortunate to think that there are many professionals out there (my friends/colleagues among them) who are discriminated against by their employers because they disclose lived experience. This becomes especially difficult when an individual with lived experience has a mental health record which employers can request access to during a vulnerable sector screening (this may be Canadian specific). While it is illegal to not hire or fire someone due to a mental health issue, employers are set up with a variety of excuses to do so because of the  discrimination within our society. A personal crisis where the police were called in as a safe mode of transportation can suddenly turn into “You may hurt the children,” despite having no history of violence towards others and a wealth of history working successfully with children (it’s the police involvement that give someone the mental health record). Most often, individuals with lived experience chose to pursue a career in mental health because of their lived experience (I know I did). It’s disappointing that discrimination and not actual evidence of poor work ethic can be the cause of so many dashed dreams.

I’ll end with a final quote from Pickles that illustrates the downfall of psychiatry for not welcoming lived experience,

“I’ve often worried that my own silence has helped to reinforce certain assumptions about mental illness — that recovery is impossible, or that mental illness should be kept secret. I think of the oncologist, who was able to use his experience with cancer to enrich patient care, and I wonder why this shouldn’t be the same for mental illness.

Many psychiatric organizations are taking on the challenge of stigma. But I wonder if we really can stay in our respective closets while still advocating for a society that is more open about mental illness.”



7 thoughts on “Lived Experience Not Welcome

  1. It’s the vulnerable records check that has kept me from pursuing anything school and career wise. I know the employer/school can’t legally say its because of mental health issues, but they all have good lawyers who have valid reasons not hire someone and get away with it.

    I don’t have any violence towards anyone except myself with suicidal issues and self harm, but I had a lot of police involvement at my worst in 2012 not because of anything criminal but because in BC police are the primary first responders to anything mental health related, not paramedics. Even when I overdosed and was not really conscious, paramedics were never called, the police took me to the hospital.

    But other then medical related jobs, there is nothing else I can think of that I could do, and make a wage I can survive on, and do something I enjoy.

    Pretty much every career choice I have an interest in and would like to do, I can’t do because of mental health records not being private and confidential from employers.

    I understand why the law exists, however it’s abused and nobody really seems to want to change any of that.

    I know Ontario has better rules in place and more interest from groups to change things there, but in BC we don’t seem to have that pressure to change anything and no clue if anything will ever change here, the government seems content to keep things they way they are.

    I personally won’t tell anyone outside of very close friends of my mental health issues, and I will never tell an employer because of the fear of stigma, but it makes me look like a flaky employee because chances are if I telly my employer I will be looked at differently and probably still lose my job.

    I’ve sat through conversations where co-workers have sat there and made fun or other negative remarks about mentally ill and such, and I pretend it’s not affecting me. I am too afraid to stand up because of the stigma. It’s there in full force still, and telling people in my experience has always led to bad things so I keep it quiet.

    Luckily my partner is bipolar and understands mental health issues and there is no stigma in our relationship which is likely why it’s so strong, where in past relationships as soon as I mentioned mental health anything, it was the start of the end. My partner also doesn’t tell anyone about her bipolar because she has had the same experience of stigma from employers and friends when she has told people, so like me keeps it a secret.

    Add in the stigma we face because we are on disability and have no visible disability, it’s really hard. We have faced stigma from physically disabled people because they don’t see mental disability as a real disability.

    I know this is long, and sorry for that, just needed to share because this post is so relevant to what I have experienced, and why I haven’t pursued a career.

    • justin, you are so spot on about everything you just said. thank you for sharing.

      the one that i never really thought about too much but you said it in a nutshell~~”Add in the stigma we face because we are on disability and have no visible disability, it’s really hard. We have faced stigma from physically disabled people because they don’t see mental disability as a real disability.”

      as far as school/work, have you ever considered law? you could study it and have your own business. there are so many areas in law in which you could work alone or with others. patent law, paralegal, and sooo much more! AND it is a job that could be fulfilling when you find your niche. AND if you go into law, think of the influence you could have!

      • Law is a good idea! I had a lawyer suggest Paralegal to me not to long ago. It could be worth looking into if you’re interested Justin. The impact you could make in law could even change the medical experience!

  2. I’ve been considering going back to college at some point. This information may be critical in my decision making process. I need to find out how people with MI are treated in the job market in the US. Thank you!

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