Sometimes I get curious and I just have to ask, “What’s it like on the other side of me?”
While I’ve been doing research for my book, I’ve had the occasion to talk with a couple of friends and after asking that question and receiving two very different approaches to the same answers, I got to thinking about the families and friends of people with schizophrenia and how common this conundrum really is. How much do they know about the disorder, the symptoms, or what their loved one is experiencing? How much of what they know is assumptions based on the social stereotypes we all live with, and how much is informed through doctor’s opinions? How often does the person with the illness feel safe enough or trusted enough to tell their story? Then I did like all good researchers and turned the questions back on myself. How often do people ask me what it’s like or tell me what it’s like for them? I realized this is one area where that elephant in the room casts a big shadow. Dialogue rarely happens.
I’m generally alone when it comes to talking with another person about my symptoms. They rarely open up and discuss their side of the experience with me, without me asking them first. Mental Health Awareness Month has a nice ring to it, and the altruism is respectable for people getting involved in stigma busting, fundraising, and public awareness events, but what about the initial starting point, the actual conversations with people who live with mental health disorders, especially the ones involving psychosis, that monster under the bed that no one wants to admit to being afraid of? In my experience, there seems to be a missing puzzle piece. So how do we as a community engage one another in that most essential one- on-one, face-to-face, real conversation?
I know it’s hard to discuss symptoms due to the many misconceptions out there, and it’s even harder when someone wants to remain anonymous for fear of backlash and bullying, but that would seem to me to be where trust is implicit. I wouldn’t discuss my innermost secrets with a complete stranger, so why would I discuss my mental health with them? No, it needs to start with trust, plain and simple. How forthcoming my friend or family member will be is entirely up to them.
Often I have heard the phrase “My child/relative/friend doesn’t want to admit that they’re sick.” If your loved one is dealing with a thought disorder, there’s a very good chance that they’d happily admit that there was something amiss were it possible for them to discern that. I have mentioned this symptom in my blog numerous times—and I can’t stress it enough—but anosognosia is what’s likely causing your loved one’s comprehension of their illness to be shortsighted. The symptom tells them they have no illness. It’s not their “fault”—there’s no blame here. If this were stomach flu, you wouldn’t accuse them of vomiting for attention. You wouldn’t say, “They just refuse to keep their food down,” as if they had a choice in the matter. You can clearly see what a trap your loved one is in from the onset. The brain lies to itself. This is not willful incorrigibility, this is the disorder. It takes so much work to get to a point where understanding this symptom makes any sense. I still wonder. I sometimes consider that I’m a medicated zombie with nothing to look forward to but the punishment of sleep and the banishment from my friends because “they” think there’s something “wrong” with me. It is a vicious symptom. Dealing with it takes patience all around. Imagine if you were constantly being told that everything you knew was false.
Then there’s the issue of asking what it’s like to have to deal with me, the schizophrenic friend. Talk about fodder for isolation—no one ever speaks to me about it. They find it easier to say things like, “You don’t look schizophrenic” or “You don’t act crazy” as ways to say that they’re more comfortable not getting involved beyond a certain point. So our conversations can be stilted or excessively polite or politically correct to the point that we exist in a brief vanilla bubble of blandness rather than open communication, leaving me to wonder, “Do they fear me? Am I the renegade lunatic of their news-clipping nightmares?” And of course, that is precisely what we mean when we address stigma—the marked sense that our discomfort with one another stems from forces outside of ourselves like little social puppet strings controlling our behavior when we really want and need to connect.
So we find ourselves in a difficult place sometimes. How brave do we have to be? I’d say the answer lies in how much humanity we have within ourselves. Getting past the symptoms and the stigma is one thing; reaching out and bonding is another. Both are necessary to move us further along the path to self-awareness and support. Let’s keep those conversations going. Initiate the change with one kind word.