When talking about mental illness online: pick your social media battles

Talking about mental illness online, but not acknowledging people with lived experiences, is not mental health advocacy. It is mental health porn.

When I was first diagnosed with a psychotic disorder, I kept it to myself. I didn’t care about correcting judgmental comments or explaining the difference between “psychosis” and “schizophrenia.” All I wanted to do was get through this “rough patch,” so I could get on with my life.

However, persistent serious mental illness doesn’t work that way. I realized that my psychotic disorder was a part of me, like my brown hair or my love for early 2000’s TV shows.

Once I came to this realization, I allowed myself to become open about my experiences. However, even though I accepted myself, there were always others who couldn’t empathize with my perspective. Although some people were bold enough to reveal their ignorance to my face, most of these distasteful comments came from the internet.

For my own well-being, I try to pick my social media battles when talking about mental illness online. However, every once in a while, I’ll read something that triggers a deep-seated annoyance, and I can’t help but comment.

A few months ago, I got into a Facebook argument with a bunch of people who said that they had not experienced psychosis. Someone had shared a video interview of a person with a psychotic disorder. Who this person was or the title of the video I can’t remember (although I wish I could). What caused this argument were the comments underneath the video.

Most of the comments I saw were people expressing how brave this person was for living their life (typical inspiration porn BS). However, many of these comments went even further than the typical “Oh he’s so brave, I didn’t know people with psychosis could have fulfilling lives,” to saying that his mental health is “unique” and “fascinating.”

These were not people who were trying to destigmatize psychosis or share insightful perspectives on psychosis from other cultures. These were people who thought it would be complementary to imply that psychosis is such an exotic and interesting experience that “people like us can’t imagine it” (they all said “us” or “we,” as if nobody in the comments could actually have lived experience).

As I said, I try to avoid internet confrontation when talking about mental illness online– but it was very annoying to see a bunch of people on Facebook pats themselves on the back for being so open-minded while in reality, they were exoticizing an experience that many people have struggled to accept because of this implication that it is deviant.

I responded as nicely as possible that, as a person with a psychotic disorder, it is difficult to hear psychosis spoken about in such a way. I was met by several commenters defending themselves and telling me that I was wrong about psychosis. Yep, me. The one person who did say she agreed with me turned out to actually severely miss my point because, in her next comment, she said that psychosis shouldn’t be romanticized…because it is dangerous and everyone who has it needs to be medicated.

So, yeah. That didn’t go well.

My point in bringing this up is that I am quite tired of being told that a condition I have is so “fascinating” — then being scolded by those same people when I speak about my experience, and it wasn’t what they wanted to hear.

Condescension is not a compliment.

Exoticization is not empathy.

Talking about mental illness online shouldn't be this hard.

I hear this all the time, from US Psych students, random folks on Facebook, even people who claim to be mental health advocates. Talking about how strange and fascinating psychosis is to you, but then not acknowledging people with lived experiences, is not mental health advocacy.

I get it. People who make these comments think they’re coming for a good place. But before referring to my experiences as something totally foreign, I wish they’d remember that psychosis doesn’t exist just in movies or medical textbooks. There are people behind these experiences – and we’d like to be heard.