3 Times My Fear of Mental Illness Stigma Actually Hurt Me

It’s undeniable — the stigma around mental illness is alive and well. It can cause immense damage to someone’s life, affecting everything from their self-esteem to their career and more. As someone living with schizoaffective disorder, I am no stranger to stigma. But over the course of my time with this disorder, I’ve found myself in situations where stigma was minimal or even absent, but my fear of stigma was so strong that I remained silent when it actually would have benefitted me to be open about my mental illness.

Here are three situations where my fear of stigma hurt me much more than disclosing my diagnosis would have.

1. Saving my college scholarship.

I had just finished my first year of college and second year with schizoaffective disorder. Mental health-wise, the year had been OK. But academically, it was a disaster. Schizophrenia spectrum disorders come with cognitive issues like slower processing and difficulty with memory, and I hadn’t yet figured out how to adapt to it. I couldn’t keep my head above water, and when I received notification that I was losing my full-ride scholarship to my university, I panicked.

I anxiously explained my disorder and the special circumstances it created to my contact at the foundation through which I had received the scholarship. They said the board would meet and get back to me. When they delivered their final decision to end my scholarship, they told me that, had I told them about my disorder in advance, they might have been able to work things out.

The reason I had not revealed my schizoaffective disorder diagnosis was that I was afraid. I was afraid they would rescind their offer and give the scholarship to someone else, someone less “crazy” and more likely to succeed. I felt like the words “schizoaffective disorder” would swiftly erase every qualification I had and replace it with stereotypes of violence and dismal futures.

What I didn’t realize is that they actually perceived it more as a learning disability. One that would not take away from my academic efforts and that could be accommodated. But my fear had kept my lips sealed. I grieved the loss of my scholarship, but it made me more determined than ever to seek out what I needed in order to get on track academically.

2. Finding a new psychiatrist.

Stigma isn’t always about others being afraid of you or looking down on you. It can also take the form of people not believing you because you look “fine.” And it’s hard to have your symptoms and experiences questioned or to be told you’re not “sick enough.”

When I was diagnosed with schizoaffective disorder, we decided to get a second opinion. The psychiatrist didn’t even let me finish talking about my symptoms before he laid his hands on his desk, leaned forward, and gently said, “You don’t have schizophrenia.” Despite that, my parents and I trusted the psychiatrist I had been seeing who had given the schizoaffective disorder diagnosis. But when I moved out of state to college and needed to find a new psychiatrist, I found myself sitting in the chair, as, once again, I was told that I was too “high-functioning” to possibly have schizoaffective disorder.

It made me question everything, wondering if maybe I was misinterpreting things or even just being overdramatic. Were my hallucinations really hallucinations or was I just reading into things?

A couple of years in, he finally changed his mind and confirmed my schizoaffective disorder diagnosis. Unfortunately, I had to go through a severe psychotic episode for him to come to that conclusion. Some of his treatment decisions had had disastrous results, so I no longer felt safe in his care.

But I was so afraid of facing another dismissal of my symptoms and their severity that I remained his client for another two years before working up the courage to face a new doctor.

3. Training for a role in a new company.

A year and a half ago, I started work in new company, but recently I began to feel as though I’ve done a disservice to both my employers and myself by hiding my diagnosis. My symptoms have interfered occasionally in past jobs, but in the position I currently hold, they noticeably impacted my performance until I began to find ways to adapt. I struggled to remember instructions, learn new tasks and feel comfortable socially. It reached a point where my job was nearly in jeopardy. But still, I did not say anything.

The odd thing is, the firm that I work for does a great deal of work with individuals with mental and physical disabilities and their families, including people who live with schizoaffective disorder. Yet I feared that they would look down on me for it and that they would fall victim to the stereotypes even though I knew they did not feel that way towards their clients.

Chances are, had I explained my situation, they would have been nothing but understanding and supportive. But even after I got to know them well, I couldn’t fight the fear. At this point, there’s a good chance they have seen my blog or an interview I’ve done, as I’ve not tried to hide it, but there’s still lingering anxiety. It doesn’t matter that I’ve been openly fighting the stigma around mental illness for 10 years — the fear is so deeply ingrained in the back of my mind that it seems nearly impossible to uproot it. But I’m determined to try.

Here’s the takeaway.

Unfortunately, the stigma around mental illness is still a major problem and it’s often hard to judge when it actually is safe and helpful to disclose a diagnosis. While I encourage others to take those opportunities when they arise if they feel safe to do so, I know it can feel like any situation is too risky, and that’s OK. I’m right there with you. But, even if we don’t see those instances, they’re out there. And as much as I have lost by not recognizing when it’s safe for me to share my diagnosis, it makes me happy to know that these moments and situations exist. I know we’ve got a long way to go, but, whether missed or mastered, these opportunities to be open and supported give me hope for a day where moments infected with stigma become the minority, not the majority.

Follow this journey on the author’s website.