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Insisting on the truth

January 01, 2009

An unspoken assumption about the behavioral healthcare field is that an inherent value is placed on the truth. We talk about helping people move out of denial so they can recognize the truth in their lives; we ferret out the true causes of illness; and we help people understand their own truth. Yet when it comes to living our own truth, behavioral healthcare professionals seem just as likely as anyone else to avoid it when it's uncomfortable.

A pervasive example is the hush-hush approach many adhere to about discussing personal experiences of mental illness. The truth is that many behavioral healthcare professionals have been diagnosed with a mental illness at some time in their lives. Yet instead of using this as an asset and a bridge for connecting to those they serve, this information usually is kept out of sight—undisclosed.”

We decided this truth was worth shining the light on because sharing our experiences is powerful and makes an amazing difference. When we speak our own truth about recovering from mental illnesses, we lessen the influence of our strongest foes: prejudice and discrimination. What if we all could share our lives more deeply without fear of retribution?

Retribution is a fairly strong word, but let's not shy away from it. Let's take it on! The four of us have had so many people tell us at conferences where we've shared our personal recovery stories that they'd like to share their own experiences too. When we asked them what holds them back, they describe fears of retribution and discrimination at their workplaces.

The more we thought about this, the more we realized the profound contradiction: Those who have chosen a behavioral healthcare career can't admit to experiencing the same challenges that plague those they serve. We know that prejudice in behavioral healthcare settings can be stronger than anywhere else, and that prejudice doesn't stop with the people we serve. It extends to those who deliver services. We want to help remove these prejudicial attitudes and discriminatory practices in behavioral healthcare professionals' workplaces.

If we could make it safer for behavioral healthcare professionals to talk about their own personal or family experiences of living with mental illnesses, we could have a dramatic impact on prejudice and discrimination toward staff and service users. Furthermore, this could open the door of “mutuality” for professionals, which has been a key factor in making peer support such a valuable asset in the healing professions.

Research on prejudice and discrimination tells us that the most effective way to wipe them out is through personal relationships and truthful information. For example, say a new family moves into your neighborhood. You meet them and like them. Your kids are the same age as theirs. You see them each morning because you walk your dogs at the same time. Some mornings you walk together, and a friendship develops between you. One morning they tell you that they have medical appointments coming up.

“Anything serious?” you ask.

“Just routine, but we're looking forward to it because both my son and I may need a medication adjustment.”

You're a little concerned so you ask, “What are the medications for?”

“Both my son and I have been diagnosed with a mental illness, and we take medications regularly and also go to self-help programs to keep us on an even keel.”

By now your connection with your neighbors is strong enough that your compassion for them prevents any adverse reactions you may have otherwise felt.

Campaigns against prejudice and discrimination during the past few years have taught us that this scenario and others like it regularly play out in communities nationwide. They are working. Yet what's keeping these same techniques from being effective at our own workplaces? Why are we afraid to tell each other that we have the same conditions as those we provide services to? Why have we shied away from telling those we serve that we have the same conditions they are trying to recover from?

Perhaps we prefer the illusion of being the “well ones” who help the “sick ones.” Once we realize our “oneness,” the invisible curtain of the “we/they” duality begins to rise, and we get uncomfortable about what might be exposed. It's then that we realize we are no longer immune, and that we too could become entangled in mental illness's gnarly tentacles.

Lori's experience

Even if we feel safe enough to raise the curtain, it's still not easy to talk about our vulnerabilities. Here's a brief description of what it was like for Lori. Notice how hard it was for her to speak up, and how difficult it was for the team to know how to respond.

“When I first realized that recovery was possible for me, I was able to start telling people about my own personal experience with mental illnesses. The hardest place to talk about this was at work. I wanted to speak up but I also wanted to be a member of the team and to just go along with the thinking of the group. The longer I didn't speak up, the more resentful I became toward my team because I felt they weren't focusing on people's potential to recover. When people who were receiving services would give the team a hard time, I wanted to cheer. I remember one time a member of the clinical team complained that the ‘consumer’ refused to let her into her house, and I wanted to stand up and shout ‘yes!’

“I realized that my integrity was out of whack, since I was pretending to go along yet I had completely different ideas about the course we should be taking. So I spoke up. I told the team that I had the same illnesses and took the same medications as the ‘consumer’ and that I didn't think the approach they were taking was helpful. In retrospect, I could have handled it better—in ways that were more about me and less negative toward what I saw happening. I'm better now at telling the truth in ways that promote a deeper understanding instead of just being irritating.

“My truth telling changed the relationship I had to the team. I was treated more as an outsider for several weeks. I'm sure it was very uncomfortable for them because they are taught to not form friendships with people who have mental illnesses, and now that they knew I had one, what were they supposed to do with me? I was one of those people. My teammates kept me at a safe distance. Yet underneath the distance, I could feel some of the team supporting me and agreeing with me. They just couldn't speak it yet, just as I couldn't in the beginning.”

Ed's experience

How can we handle our own internal feelings once we speak up? Ed's story has a glimpse of the internal struggle to maintain dignity. Note Ed's remarkable way of using the experience to learn more about himself.

“After years of doing trainings, starting more than 600 self-help groups, being appointed adjunct professor at Boston University, and having reams of publications and a list of speaking engagements as long as your arm, I still encountered stigmatizing experiences. One encounter that stands out for me was during a class I was teaching at the Center for Psychiatric Rehabilitation at Boston University. During a break, a colleague told me that another person in the class, Jim, was making derogatory comments about me related to my mental illness. I wasn't sure how to handle this, but I knew if I ignored it I would lose credibility with the whole class and they would stop listening. So I asked Jim to leave the class.

“The next day Jim returned but I held my ground. My supervisor defended my decision and said that he knew me to be truthful and peaceable, and if I had asked Jim to leave I must have had good reason.

“My own internal reaction was to have feelings of anxiety and disorientation, which are often thought to be symptoms. Symptom terminology does not comfort me. I don't find it helpful to name my mental stuff or attribute causes to it, or build a long story around it. I see it as a temporary discomfort and let it pass. Once I was able to do this, I could see that Jim was actually a spiritual teacher whom I thank.”

Thus, a negative experience with someone prejudicial toward people with mental illness actually can help people in their own recovery. So don't let fear of negative reactions stop you from speaking up.

Peter's experience

Sometimes telling the truth has to come out in a direct statement—no mincing of words. Yet the gentler we can be, the less damage we leave in our wake. Peter's story has a blend of containment and straight talk.

“I had been the director of a consumer (of mental health services) operated agency for a few years and was appointed to work on a task force by our office of mental health. I was the person charged with assuring that the voices of service participants were being included. The purpose of the task force was to develop a plan for transforming our system into one that reflected recovery values.

“I brought forward all the logic, science, and patience I could muster but was unable to break through the wall of resistance to change. Finally I said, ‘I'm feeling outnumbered. I'm feeling like I'm not being heard. My opinion does not seem to count.’ Well, you could have heard a pin drop in the room, and all eyes focused on me, the ‘bad one.’

“A voice in my head was screaming, ‘Why did you say that? You just alienated the entire group.’ Above the roar of my own self-talk, I heard one of my colleagues ask, ‘Have you taken your medication today?’ Now, I'm a big guy (6'6′, 250 lbs) and I've learned the hard way to contain my expressions because if others get scared, it hasn't turned out so good for me. So in my most contained voice I said, ‘Yes. Have you taken yours?’ That pretty much ended the meeting.

“I asked our commissioner, ‘Can we ever really be open and honest without being considered out of control, dangerous, or symptomatic?’

“Shortly thereafter I received a written apology, and I was never disempowered again in that format. It's important to me that the services that are supposed to help us not further stigmatize us.”

Bill's experience

Other illnesses and conditions are less contaminated by prejudice and discrimination. Yet speaking up about them can be critical to one's well-being,1 as Bill discovered.

“The day after I was diagnosed with multiple sclerosis I wrote a note to the staff at the Center for Psychiatric Rehabilitation, where I work, telling them of my diagnosis and my plans to deal with it. I never wanted to hide the diagnosis, even though many folks with MS hide it for as long as they can. Like mental illnesses, many of the more common symptoms of MS are often able to be hidden, such as chronic fatigue, balance difficulties, bladder problems, muscular weakness, and depression, as well as the side effects of MS meds. I did not want to waste any energy hiding my MS from others, and if people judged me as someone to be pitied or saw me as less a person because of an MS diagnosis, that told me who they were, not who I was.

“We give people the power to judge us, and I was not giving my power away to prejudiced people. I learned later that many in my MS support group are more careful about disclosure than me, especially in the work setting (and probably with good reason). But partly because of the courage I have seen in people with mental illnesses when they disclosed, as well as the ever-increasing numbers of disclosures and its long-term positive impact on attitudes toward mental illnesses, if I wanted to live a truthful life, I had little choice but to speak up. I am so glad I did.”

Creating truthful workplaces

Our four stories share common themes. Wanting to be part of the group, yet needing to express personal uniqueness that could generate a separation, stands out as an underlying concern. Not being sure of how to speak up also is part of the equation. Then there are the self-doubt afterward and the lonely feelings and fears of being judged and not being supported. Both Bill and Ed show us ways to move beyond this, and as Bill so aptly puts it, it's vital to not give our power away.

When employees are discriminated against because of their ethnicity, age, or gender, our leaders are quick to step in and address the issues. So what can leaders do to eliminate prejudice and discrimination in the workplace when it's related to behavioral health issues? What can they do to create work environments that value and use personal experiences as an organizational strength? How can they use honesty as a strength to move our organizations toward a higher level of integrity? Here are some ideas to consider:

  • Role model acceptance and appreciation for staff willing to share their personal recovery stories.

  • Ask staff if they would be willing to share their personal experiences in staff meetings so others can learn from them.

  • Ensure your hiring practices don't discriminate against applicants with behavioral health issues.

  • Add information to your ethics and boundaries training explaining how to integrate staff's personal stories.

We close with a quote from Kay Redfield Jamison, author of An Unquiet Mind: A Memoir of Moods and Madness: “One is what one is, and the dishonesty of hiding behind a degree, or a title, or any manner and collection of words, is still that: dishonest.”2

Lori Ashcraft, PhD, directs the Recovery Opportunity Center at Recovery Innovations, Inc., in Phoenix. She also is a member of Behavioral Healthcare's Editorial Board.
William A. Anthony, PhD, is Director of the Center for Psychiatric Rehabilitation at Boston University.
Ed Knight, PhD, is Vice-President of Recovery at ValueOptions.
Peter Ashenden is President and CEO of the Depression and Bipolar Support Alliance.

To contact the authors, e-mail loria@recoveryinnovations.org.

References

  1. Donoghue P, Siegel M, Van Abel M. To tell or not to tell. Inside MS 1994; 12 (2), 13 (3).
  2. Redfield Jamison K. An Unquiet Mind: A Memoir of Moods and Madness. New York Knopf; 1997:199-209.

Sidebar

For more on this topic, visit http://behavioral.net/ashcraft1007.

Behavioral Healthcare 2009 January;29(1):11-16
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