Guest Post: Mental Illness Stigma at Work by Stephanie Shantz

I’ve lived with mental illness for my entire life. When I was little and visitors came by, I would dash to my room and hide for hours, too fearful of interaction with people I did not know well. On one occasion I overheard one of my visiting relatives comment that I was just a loner and would never be able to get a job. Turns out getting a job would be the least of my employment woes. While my social anxiety faded over the years, it was quickly replaced with other, often equally debilitating symptoms. When I first entered full-time employment, I suffered a depressive episode which not only cost me my job, but ultimately led to a conclusive diagnosis of Bipolar Disorder, and for the first time in my life, effective treatment. Over the next few years I started building a career as a Youth Worker. When I was well, I was respected and received positive feedback and appraisals from my clients, colleagues and supervisors. When I was unwell, work became an intense struggle and my performance would quickly deteriorate. I would suffer anxiety attacks at work, become disengaged and stare blankly at my loudly buzzing computer monitor, or tear up at the slightest hint of criticism from others.

Disclosing my illness during an episode or return to work always seemed a necessary step, but yet never led to the support and understanding that I hoped. I would be moved to a new team, given an undesirable office space, assigned menial tasks, or learn that colleagues had been directed to have minimal or no contact with me. On several occasions I was required to see health professionals selected not by myself, but by my employer, to prove I was well enough to work. These barriers chipped away at me, and typically led to my employment ending within a few days or weeks of returning to work – if I returned at all. After experiencing an episode of illness and the subsequent job loss that came with it, I would for months, even years at times be consumed with shame and guilt about my illness. I would tell myself I did not deserve to be treated with dignity or be part of the community through an episode. It was difficult to see value in myself beyond the way I was treated by employers. Life became a cycle of illness followed by stigma followed by more illness. When I was well, it was as if I had everyone fooled about the real me, the sick me which would eventually rear its head. Yet I kept pressing forward, and through it all I developed resilience and a resolve for helping others with mental illness and promoting mental health. This led to landing my dream job in February 2012 doing community mental health education. Finally, I felt at home, and believed I had an opportunity to use my lived experience to influence the community discourse.

While my Supervisor was aware of my illness, there was little discussion about it. My focus was on the quality of my work, and like a sponge I sopped up all the knowledge and skills I could. My first year with the organization was full of opportunity and growth, and I was commended for my work on many occasions. But underneath it all my battles with mental illness continued, as I struggled intermittently with episodes of depression and anxiety that I did my best to hide. At times when I felt my productivity level was down, I attempted to make it up with extra, “off the books” work on the weekends and in the evenings. I was willing to do whatever I could to be successful and keep my illness from becoming a performance issue. About a year into my job I couldn’t hide anymore. Illness slowly crept up on me, and then hit with full force. I began to believe I was not worthy of being well, and stopped my treatment as a result. This naturally made things worse. My life spiraled downward and working became unmanageable:

Illness eroded my work relationships: No one likes me anymore. Everyone thinks my work sucks. Why aren’t people pulling their weight? I don’t want to be around anyone. I am tired of everyone.

Illness broke my self-worth: I don’t deserve this job. Who do I think I am working in this field? I’m no good at anything anyways. I don’t deserve to be well. I don’t deserve treatment. I don’t deserve anything. I’m a monster of a person.

Illness created performance problems: Why try? What’s the point of any of this? I’m going to fail at that presentation. I’m too paralyzed to pick up the phone today. I need to make this perfect, I need to keep fixing this report until it’s totally perfect. I need to find time to redo this. I need to work extra so I can finish this.

In early March 2013, about a week before a major event I was the lead on planning, I hit rock bottom. I couldn’t work anymore. I took a month off. I felt broken, devastated, guilty, worthless. In my mind I had let everyone down. Not being able to attend the event I had spent the last year planning broke my heart. I was a failure. My anger grew. I blamed myself, I blamed my illness, I blamed others. The days and weeks passed. I met with my Supervisor to plan my return. It was a difficult meeting, I was angry and felt I was not being heard. Eventually it was decided I would return on a gradual schedule, and do in-office work only to start. I was assured I did not need to worry about being forced out or fired. I left the meeting hoping that was true.

I was not 100% well when I went back to work. But who ever is? You do not get 100% well, if there is such a measure, by eating frozen dinners and watching re-runs of House for weeks on end. You get well by reintegrating into the workplace, reconnecting with others and renewing your sense of purpose. The first couple weeks back were tough. I struggled to get up in the morning, and on a couple of those first days I called in because I felt totally paralyzed. Getting dressed and going to work was just too much…work. I was angry and felt like I had no way to resolve that, so I toiled at home in my anger instead. Then there was the anxiety. I was fearful of what other staff thought of me now, what they knew about my absence, and whether they resented me for having to pick up the slack on my work while I was away.

Shortly after my return I was put back in charge of a large agency event that was only a couple weeks away. Planning was behind schedule due to my absence, and I threw myself straight in. It was an awesome distraction from the symptoms I was still having. Over a three week period I moved from working less than 10 hours a week, to working more than 50. I was desperate to prove and re-establish myself at work. It was all too much, too soon. By the time the event was over I was living off adrenaline and couldn’t “settle”. I no longer had a point of focus to distract from my symptoms. About three days later I got into an argument with my Supervisor in a meeting. I was rude and blew a minor situation out of proportion. Afterwards I was shaking and agitated and knew I was not well. I apologized to her and to other staff for the outburst. My Supervisor’s response was that maybe I couldn’t do this type of work. This was the work that I loved, work she had previously praised me for doing well. Having worked successfully in my position for a year before having a major episode of mental illness, these comments were utterly devastating to me.

I saw my doctor that afternoon and we came up with treatment changes to address my symptoms, the goal was to keep me working. I communicated this plan to my Supervisor. That’s when everything changed. My Supervisor’s response was that I was not allowed to be at work over the next week or talk to colleagues. She stated she did not think I was well, and wanted a doctor’s note saying how many hours I could work. Even though my Supervisor believed I was unwell and could not be at work or interact with others, she still required that I complete work from home. I knew something was very wrong. I became panicked that I was about to lose my job. I felt incredibly stigmatized, shunned from the workplace and yet still required to do work. I submitted my doctor’s note, and spent the next few days muddling through my work in tears, eventually refusing to do further work until I was allowed to return to the office. I wanted the same dignity afforded to every other employee. Instead I was fired under the pretext that I was “refusing” to do work.

I told myself it was all my fault for refusing to work under conditions that I found stigmatizing. That it was my fault because I got upset in the staff meeting. That I didn’t deserve the job because I had affected other people. That if I hadn’t come back from sick leave so soon none of this would have happened. I shamed myself. I blamed myself. I beat myself down and created a narrative where everything was my fault. After many months of tears and guilt, I finally accepted that the real question isn’t what I could have done to make things be different. Mental illness, and the assumptions made about my abilities because of the illness, is not my fault. Employees have a duty to cooperate in the return to work process to whatever extent they are able, but the onus needs to remain on the employer, not the employee, to lead in the management of the return to work. Mental health recovery, especially in the early period after an episode of illness, is a fragile and fluctuating state. There will be bad days. There will be symptoms. There will be problems. To discipline or fire an employee recovering from an episode of mental illness without due consideration for their state of health, is reprehensible.

I have resolved myself to the fact that because I was ill I was no longer viewed as the loyal, trustworthy and productive employee that I once was. It was like my employer had an episode of amnesia, my true character and positive contributions were forgotten. I was told I needed to be working elsewhere, somewhere less stressful. Just not there. I often think of ways I could have easily been accommodated to be successful at work again, but remind myself that it simply wouldn’t have mattered, because my employer no longer believed in me. It saddens me that my value and potential as an employee was outweighed by the symptoms of illness I was having. I was deemed completely dispensable while in a fragile state of recovery and in obvious pain.

If I wouldn’t have become ill, I would still have a job.

Going forward there was, and is, just one option. Carry on. I grieve the loss. I stigmatize myself. I get angry. At times I am paralyzed and overwhelmed by the trauma of what occurred. But I keep going everyday. I carry on. After several months of shame, blame and self-stigma I became well enough again that I recognized the need to speak out about what happened to me. I was, after all, working for an employer that has mental health promotion and supporting those with mental illness at the center of its mission and values. This lends to just how deep rooted and systemic the prejudices against people living with mental illness is. I cannot regain what I lost, but I can go forward with a renewed conviction to help reduce these types of negative attitudes and resulting behaviours by employers. I have made the decision that I will, now, tomorrow and always, speak out and fight so that one day the dignified inclusion of people with mental illness in the workplace, and in the community as a whole, is the norm.

Until that day comes I will continue to grapple with one lingering question: WHY?

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