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What is it like to live with schizophrenia?

Q&A: Tiktoker shares his experiences with mental illness in the hopes of debunking myths and challenging stereotypes.

Schizophrenia isn’t as scary as many people have been led to believe. That is the message Tiktoker Daniel Hale (@danielhale40) aims to spread with his content. 

Hale has been sharing educational videos about his personal path with schizophrenia for about a year. 

He aims to spread awareness and understanding that can combat the stigma and stereotypes that surround mental illness, he says. 

Statistics show about 1% of B.C. residents live with schizophrenia — that is about 50,000 of the province's approximately five million people. 

Hale’s videos open a window into a world many of us don't ever get to see. 

The Squamish Chief reached out to Hale, 30, to learn more about his journey, the myths he wants to dispel and why you shouldn't be afraid of folks like him. 

What follows is an edited version of that conversation.

What made you want to expose yourself in this way and educate folks? 

The reality is that schizophrenia is very interesting for a lot of people — they're intrigued by it. But the knowledge and information out there are kind of lacking, and the representation that we have in the media is inaccurate. So, I want to take the opportunity to use my personal experience and my background, and my education, to educate people on what schizophrenia actually is.

When did you first think something was wrong? How old were you?

I was 26, or 27.

 I was pretty stressed out and there were just so many voices in my head. There were so many conversations going on that I had kind of lost my inner voice — like I couldn't hear myself think anymore. I went to my doctor just thinking it was just stress, but that's when we went down the road of going to a psychiatrist and I got officially diagnosed.

How did you feel about getting that diagnosis? Were you scared or how did you process it?

It was a little scary; yeah. I studied psychology and counselling in college. And so, I did have a working foundation. But there was still just something —  I won't say I was in denial, but definitely, one of the first things I did was schedule an appointment with a neurologist to make sure that everything was OK physically before we went down the schizophrenia road.

And I think that's part of an internalized fear because of the media. 

And then, as I grew into my symptoms and got treatment, I found that that's not what it's like at all. So, the first reaction was just scared and then accepting it and turning it into something productive.

Day-to-day, what's the impact on your life? Are you still working full-time? 

I work full time, and the impact on my life, for the most part, is very low. 

I constantly have voices in my head. And that's probably something that's never actually going to go away no matter what treatment path we go down. 

I occasionally experienced delusions, but so far it hasn't really impacted my day-to-day life that much.

Unless I experience some acute psychosis like a deeply held delusion or a really persistent hallucination — I would say that’s only happened a couple of times —  every other month. They're pretty infrequent because my medications are working pretty well.

Usually, when something manifests, I can either deal with it on my own or I'm able to take a day off and just kind of reset.

How do your delusions or hallucinations manifest?

So, a delusion is something you believe about the world around you that is not true or about yourself that's not true. Some delusions I had were the belief that I was the Antichrist, there was also the belief that I had a twin brother. Those are things that are not true. 

A hallucination is something that's fooling the senses.

For me, I will see monsters in the corner. That is where hearing voices comes in — hearing voices is an auditory hallucination.

It's different from person to person

Can you expand on that? How is it different than say talking to your deceased relative in your own head or arguing with yourself — things we all do? 

The difference is, that you have to consider the origin and whether or not you can control it. So, when you are hearing the voice of the Nana, or if you are arguing with yourself — going back and forth about a decision you have to make — the origin is clear; it's coming from within you. But there's a strong difference in my brain between a voice that comes from me, and a voice that is not from me.

The next thing to consider is whether or not you can control it. If you are arguing with yourself a little bit while trying to make a decision, you finally make the decision and it probably goes away. Or if you just decide “I'm gonna put this to bed. We're gonna worry about it later.” It's done. I can't do that. My voices don't stop on command. They keep going.

What are some of the big misconceptions that you work to dispel about schizophrenia?

I think the biggest one is definitely the belief that individuals with schizophrenia are inherently dangerous. There's nothing inherently dangerous about psychosis. The studies are clear that individuals who have some sort of mental illness, specifically schizophrenia, bipolar, manic disorder, any of those things, are more likely to hurt themselves long before they would hurt somebody else as compared to the average person. 

In the movies, there's always a violent person who has schizophrenia. And the same thing happens on the news. If there's a shooting and the individual happened to have any kind of mental illness, the headline will have that mental illness in it. I can't blame people for feeling the way that they do. 

Most people haven't known someone with schizophrenia. 

So that's what I'm trying to dispel — to show that there is no inherent danger.

And then the other part is, being told what I can and cannot do because of the mental illness. 

I have some bows hanging on my wall because I'm an archery instructor, and then people will call you out like, "You shouldn't have those." And I'm like, why? It doesn't make sense. 

Or someone will say I shouldn't have a cat because I can't take care of it. That is really frustrating.

What are any positives that have come from having schizophrenia? 

Probably the biggest one is definitely a greater appreciation for individuals who have disabilities, especially those who have invisible disabilities. 

And I understand that if someone's behaving a certain way, you know, there's probably a good reason for it, or if someone's unable to do something, there may be a reason for that, which is not the outlook I used to have.

Another positive is that my early symptoms started when I was like 16, and 17, but I didn't recognize that they were symptoms at the time because they weren't bad enough to trigger any kind of health interventions. Once I was diagnosed, we found the right medication and I discovered there were a lot of things I was doing that were not working because of the schizophrenia. And once it was treated, I felt better than I ever had.

Anything else you would like folks to know? 

Something I try to share anytime that I have an audience or microphone is my vision for mental health in the future. 

I want mental health to be so in line with physical health that you could have 'Steve' call in sick on Monday and say, "Hey, I was up all night throwing up. I don't feel too good this morning, I am still a little nauseous. I'm not going to be able to make it in today." And the boss says, "Oh, wow, that sounds nasty. Sorry to hear that. Let me know if you need anything." 

And then Tuesday, I want Bob to be able to call in and say, "Hey, my hallucinations were really bad last night. I didn't get any sleep. I am dealing with some aftershocks. I am not going to make it in today."  Then the boss says "Oh, that sounds nasty. I'm so sorry to hear that. Let me know if anything."

That's what I want it to work like. 

Because in a lot of jobs — not the ones I've had thankfully — it is like, you know, bring a doctor's note. A doctor is not going to write a note that says, “He has hallucinations.”

@danielhale40 Go find Hershel A. Brewer Art on Facebook. #neurodivergent #schizophreniaawareness #schizophrenia #edutok #hallucinations #delusions #takeyourmeds #mentalhealthmatters #mentalhealth #gay ♬ Aesthetic - Tollan Kim

Where to turn in the Sea to Sky

Vancouver Coastal Health (VCH) told The Squamish Chief the health authority operates mental health intake lines for Squamish, Whistler and Pemberton. 

"These lines are a single point of entry for individuals seeking mental health and substance use health care and support services. These intake lines accept self-referrals and referrals from physicians and community partner organizations on behalf of their patients and clients respectively," a spokesperson told The Squamish Chief. 

Squamish residents can access service by phone: 778-894-3200. 

Whistler community members can phone 604-698-6455 and Pemberton and surrounding communities can call 604-698-5861.

Following an assessment, service recommendations will be provided.

Anyone experiencing acute mental health or addictions emergency is strongly advised to seek immediate medical attention by calling 9-1-1 or visiting their local emergency department.

For families and loved ones, there is West Vancouver’s Pathways Serious Mental Illness Society. The organization offers support, education and advocacy both in person and online. 

Contact Pathways at 604-926-0856o or  info@pathwayssmi.org