schizophrenia – Page 5 – The Philosophical Psychotic

advocacy, Peer Support, Supporting Friends/Family

About Mental Illness

Posted on January 31, 2020 by alidware

I recently learned in a personality psychology course that the effect size in regard to how much words make a difference to people is very small. I’m currently trying to find studies which either argue for or against this, but in the meantime I decided I’d write a short blurb about it.

I’ve found nothing becoming about the term “mental illness”. It feels defaming and self-deprecating. I don’t really consider myself disordered and I’ve been ambivalent about the term schizophrenia and schizoaffective. And if I find these studies accurate, verifiable, and reliable, than I suppose none of this really matters.

I’ve been hung up on it since I was 14. In the CCMD, one of volumes, I remember reading schizophrenia was labeled as “Integration disorder” or something similar. I read a lot of books describing mental struggles as strengths, describing medication as poison, describing this idea of “illness” as bad. I agreed, and to some degree I still do.

But I’m learning to drop the words, really. It’s not about what you want to call it. Call it Schizophrenia, call it Integration disorder, call it Mental Illness, Disorder, Disease (even though there’s not enough actual scientific evidence to prove the disease part), call it whatever you want to call it because regardless we’re all talking about the same experiences. We’re all talking about the same pain, the same beauty, the same horror, the same frustration. The issue comes when people internalize the concept of illness.

The issue comes when someone loses sight of the rest of their future because they’re being told they need to take medication for the rest of their life and they can’t work, they won’t be normal, and everything has to change now–for the worst.

This is a problem because us humans are infamous for letting go of alternative possibilities when we’re provided an answer. This happens to be scientifically proven.

What I mean is, if our answer is: “take meds for the rest of your life”, our brains don’t automatically respond with “I need to find some stable ground, heal myself, and maybe find a way to not take so much medication/taper off. Or maybe I won’t. I need to explore all my options”.

When the answer is: “you’ll have this for the rest of your life”, our brains don’t automatically respond with “I may have this for the rest of my life, I also may not. What are other options?”

No, we say, shit, I have to take these meds. If I don’t, I’ll be unwell again. This is my life line.

We say, shit, I’m doomed. This has ruined my life. There’s nothing I can do.

Sometimes life experiences and therapy and friends and support forces help us see that our life isn’t ruined. Sometimes we can get off medication, and sometimes we can’t. What’s hard for me to swallow is that a lot of us don’t ever get to the point where we can consider either point of view. What’s hard for me to swallow is that when we try and advocate for each other, we do so from the perspective of “illness” instead of “wellness”.

We glamorize this idea that “I live with a mental illness and I’m doing well.” We have that weird AA group mentality of powerlessness. Studies show AA is actually quite ineffective and having been in both AA groups and Al-anon, I find them very cult-ish. I’ve also met countless people who have been saved by AA, NA, and other support groups based in “higher-power” thinking.

But essentially, if all our power comes from us being powerless, then we’re not actually powerful. We’re not anything really, but a pawn. A puppet, maybe. We let ourselves be pulled by the strings of our “disease” or disorder and we find no other avenues of compromise because we are powerless. Sometimes we feel because we made a choice to be powerless, we are empowered. Other times we argue against this adamantly, that we “manage” our illness, and “we don’t let it control us”. But the thing that all these black and white views have in common is fear. The fear, and knowledge, that we can’t control anything.

Why do we need to? That’s the question I ask everyone who presents me with this argument. Why is control even an aspect here? When you are in a healthy relationship or friendship with someone, and you have a disagreement, do you let them decide everything for you, your thoughts and feelings, because you’re powerless against them? Do you shout back and yell and scream and punch them? Hopefully not! Hopefully you don’t engage in either activity. Hopefully you engage in compromise.

When you’re in an unhealthy relationship, if someone is abusive, the partner often submits, terrified, hopeless in an uncontrollable situation. I am guilty of trying to force my thoughts and my mind into submission: I abused myself. My mind is guilty of trying to trap me in madness; my mind abused me.

But if we can engage with compromise with others, if we can strive for balance, if each person can have equal say and equal pull, if I can influence my mind and feel safe allowing my mind to influence me, then the issue of power and control is eliminated. We are free.

Is the healthy opposite of not being able to control anything absolute submission? Is the healthy opposite of powerlessness absolute power?

And so I don’t subscribe to the concept of being mentally ill. I accept that I experience moods and delusions and hallucinations indicative of what we’ve categorized as schizoaffective. But I am not a pawn. To be submissive, to feel I either need all of the control or I shouldn’t have any control, is ill to me. And so I don’t consider myself ill.

I’ve tried very hard to avoid the term “mentally ill” because of this. But hearing about these studies and their small effect size has got me wondering if any of it really matters. It’s got me wondering if the actual concept of mental illness can be looked at differently now.

It’s got me wondering if we will ever get away from this “sick not weak” hashtag.

It’s got me wondering if we will ever see ourselves as having potential for balance, for real vitality again, for health and wealth, without also having to mention the name of our disorder.

I honestly don’t care if you’re a writer with schizophrenia. I just care that you’re a writer, and a damn good one. I care about what you write. I care that you’re living well and are happy. If you have schizophrenia, great! If you don’t, great!

Let’s empower each other’s wellness, not our illness.

PS: I never said this was a site of popular opinions, or popular science.

I stray from popular for a reason. Popularity usually invalidates authenticity.

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science, Therapy, Voices

Where Research In Re-Framing Our Thoughts Could Take Us

Posted on January 30, 2020 by alidware

We get consistent word from our therapists that if we re-frame our thoughts, we can change the way we think, the way we perceive things, and that will ultimately help us cope with life. This is often done with Cognitive Behavioral Therapy, which is a very proven (as in scientifically) therapeutic method.

There are people who praise this method for saving their lives and others who don’t, and CBT takes a lot of work–a hell of a lot of work. You won’t see results if you don’t take it seriously, and if you’re anything like me, it’s hard to take it seriously when you’re heavily depressed or so anxious you want to jump from your skin. Let me give some background on why this topic is so interesting today.

Amidst all the anxiety this morning, I spiraled down with thoughts of failure, pain of where I am in my life right now versus where I could be, and felt out of place in the classroom; other students whispered about me, and thought very loudly about me. I lost focus in the lecture and I felt bad about that.

The professor popped a meme up on the screen of some woman with a stack of papers at work scribbling maddeningly and saying “this is a two-cupcake Friday”.

I don’t remember what this portion of lecture was about, or if the meme was even relevant, but through all my cloudy thoughts and thoughts of the students around me, one of my voices said calmly “you’re having a bad day.”

And I was. But the significance of this is far greater than just that realization.

Another thing therapy shoves down our throat is that our problems which feel permanent and hopeless are often temporary and malleable. In the moment, I felt miserable. I thought I was falling into another depression, that I’d spent the last year and a half off meds and this day, today, was going to be the day I decided to go back on them because I just couldn’t take the pain anymore.

It’s been a hard three weeks, and to ignore all of those factors and conclude “it’s just my brain making me mental again” would be foolish. I’ve been stressed, and today has been particularly difficult: I had a bad day. There’s nothing else to look at.

Multiple things came to mind as a result of this voice presenting his softer side. The first was–I tell myself the very same thing all the time. I’ll say to myself, “Ugh, today is a bad day.” And I’ll recognize it, but the reality doesn’t always sink in. And so I thought, as I sat through my second course more invigorated and positive, are we more likely to believe others about our true state of self, of being, than we are to believe ourselves?

Let’s look at this through two lenses:

The Theory Behind It All:

Personality Research Shows that friends/family are more accurate in describing things we may be good at, like school/work. (Look up INFORMANT JUDGEMENTS and studies by Connolly (2010).)
Research in this area also shows friends/family are better than us at predicting our personality traits like contentiousness and openness.
Some personality researchers focus only on showing how much we DON’T know about ourselves (like WHY we think the way we do, or WHY we did something/feel something).
Researcher Carol Dweck studied growth/fixed mindset and the influence on intelligence. In her study, children were influenced with praise on their intelligence versus praise on their effort. The study didn’t have anything to do with the effect of the words, but the outcome. Still, the words had a great effect on the thoughts of the children.

The Questions That Now Arise:

1.We are our largest critics, so they say. Why does it seem we doubt the POSITIVE things we tell ourselves, but are convinced of the NEGATIVE things about ourselves?

2. Can we use this possibility to our advantage?

3. For those of us who hear voices, can we train our voices to re-frame their approach, or do they naturally mature as emotional stability improves and coping mechanisms enhance state of living/being?

4. What makes us more likely to believe NEGATIVE things about ourselves versus POSITIVE things?

5. What makes us put more weight on OTHERS words versus our own?

6. How could research in this area of behavior and cognition help further treatment and therapies for psychosis?

These are passing thoughts I had during my second and last lecture. I wondered about it because I had been soothing myself all morning, giving myself reminders that my anxiety is bad, I’m not having a heart attack, that I’m just having a bad day. The moment my voice reiterated that, relief washed over my body. Suddenly, my heart rate slowed and I could focus in class. My head wasn’t as clouded and I went to my second lecture in a great mood–partly because I was fascinated at the effect he had on me.

And so the wonder continues: there is no argument that when a voice tells you you’re worthless, or stupid, or that you’re going to die, you feel immediate dread, sadness, anger. Therefore, were one to tell you something positive, it seems reasonable the same intensity, but positive (happiness, comfort, contentment) has the potential to flow through you. The problem is there isn’t a lot of research in helping people unite with their voices, nor with themselves, regardless of whether they hear voices or not.

When I attended a Hearing Voices Workshop in San Francisco, the man in the couple leading the discussion heard voices and had just been diagnosed with dementia. They’d been spending time training his voices to remember things for him. According to his self-report, and his wife’s informant judgement, it had been working.

This would be regarded as a case study and we can’t put a lot of weight on those scientifically. But it can be a catalyst for real research and potentially a new therapeutic avenue for soothing psychosis.

It seems that we need affirmation when it comes to positive things about ourselves. It seems we need someone to agree with us, or remind us, that yes, we are safe. Yes, we are okay. Yes, this too shall pass. Yes, you are strong, yes you are this, yes you are that. It’s as if we have the inability to create that foundation for ourselves and truly believe it.

But when it comes to the negative things, our failures or short comings, we take them at face value. We don’t need someone telling us “yeah dude, you failed”, for us to think of ourselves as a failure. In fact, someone affirming our negative beliefs about ourselves seems to make it more likely we’ll believe that in the future, whereas someone affirming our positive traits/beliefs doesn’t.

What could this mean? How could we study it?

Many of us may internalize what trauma we’ve experienced as children or adults and so the automatic sense of “everything is horrible” may influence our natural thought. But even among memories of trauma and experiences of trauma, we had moments of great fun. I grew up with my dad being violent and using drugs, terrorizing my house. But I have equally intense, positive memories of being out in the garden with him, planting tomatoes and helping him work on his cars.

Why is it that the negative becomes the basis of my emotional foundation? And can we use what we know (and can still learn ) about this very automatic bias to creative equally positive, habitual thoughts?

I suppose it’s worth mentioning that since one of my False Angels reminded me I’m “just having a bad day”, I haven’t heard anyone else talking, my anxiety is at a steady, manageable level, and I’m more motivated than ever to finish this degree and research.

And to think: I’ve ignored them for SO long.

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Emotions, Peer Support

My Experience With Schizoaffective

Posted on January 29, 2020 by alidware

I did not talk in school. Violence, arguing, and substance use permeated my home. I wet myself multiple times because my anxiety wouldn’t let me raise my hand to ask to go to the bathroom. I fainted in fourth grade when asked to solve a math problem on the board. My demeanor was spotted, as far as my knowledge goes, in Kindergarten. It would have been in the years 2000-2001. My parents were informed I’d “grow out of it”. I didn’t.

I started self-harming (cutting, burning, hitting) when I was 11, just a few months before we wound up homeless. The last time was two years ago, about age 22.

Marijuana made things tolerable in high school. If I smoked all day, I wasn’t anxious or depressed. I smoked from 7am until I went to sleep. I’d leave school to smoke, cut class to smoke, and if I didn’t have it, I was thinking about it.

My internal world was very rich, and I hypothesis my severe withdrawal is why many of my voices are internal.

Cars were the first thing to talk to me. They told me jokes and had very different personalities. I’d sit on the floor of our studio, right in front of the door and just laugh and laugh. I learned I didn’t have to talk out loud to them, they could hear me when I thought my answers too.

But, I was a kid. Many kids are imaginative and I was particularly so.

The first time I heard an external voice that startled me was sometime in my freshman year of college. I’d been through psychiatrists and therapists already for depression, anxiety, and PTSD. This voice wasn’t much of a voice. She just screamed. She’d scream at night in particular.

I didn’t sleep a lot, and in high school this was because of anxiety. In college, I just didn’t need to sleep. I spent some time conducting fake studies and believing I’d cured all illness with a simple frequency level. I took physics, calculus, and chemistry to learn more and lost sight of my actual major. I knew I had a path, and with each new direction I took, a new feeling would tell me THAT, that right THERE, THAT’S my path. I’m being guided.

I dipped in some more depressions, on and off. Severe ones. They landed me in crisis units. I didn’t bathe, I quit jobs, I wouldn’t clean my room and by the end of an episode, my ankles would be buried on my floor in junk–clothes, paper, scribbles, drawings, poems, trash, trash, and more trash.

I’d hear voices, the screaming woman still, and a male. He told me I was a dead man walking. He’d call my name and laugh when I turned to look for him. I also had voices interrupting my thoughts. I didn’t know they were voices then, and they’d tell me I wasn’t crazy.

Things took a darker turn quickly. People started being possessed–my classmates, my new coworkers. This was around the time I started working at the Peer Respite. Possessed by demons, the voices, and it was their talking I fell asleep to at night.

They didn’t just communicate with me externally or internally. They left signs around the world for me: messages with news casters, trash, online ads, television shows and commercials. Then they showed me hell.

I don’t believe in hell, but I didn’t have another word for what they showed me, so I called it that. They showed me torture boards where they stood beside my latched body, laughing, turning gears so my limbs could be pulled from my body. They took the form of clowns in my room at night and my childhood fear of sleeping in the dark returned.

I believed they manipulated my dreams as well. They were there with me sometimes, I could hear them, and they sent the Day Walker after me. This became a reoccurring dream for me: a man who killed in broad daylight. He chopped off his victims heads and stuck them on stakes, which he then scattered around town as signs to me. The last dream I ever had of the Day Walker (named so by my voices), he’d found me hiding underneath a car. I smelled the mud on his boots. I never saw his face.

I awoke drenched in sweat and tears. I was used to my dreams being permeated in blood, rape, murder, mutilation, dismemberment, and terror. But something about this one was different. The voices said he was coming for me, and so were they. I then determined they were demons.

When the Las Vegas shooting happened, and the investigators couldn’t find a motive, I knew my demons were right: they’d possessed that man and killed those people as a message to me. The message was: we’re going to thwart your reason for existence, because your reason for existence is light and our reason is dark.

I don’t remember a lot about this time. I’d entered a silent war, a war whose outcome would determine my fate and the fate of the earth, given my future importance. I was constantly told I’d be killed. This scared me. I was anxious all the time, withdrawn, confused mostly, losing track of time, school, and work.

At home I stayed in my room. I’ve always been withdrawn from my parents, and this time was no different for them. It was when the sheriffs showed up to their door, though.

Eventually I threatened I kill myself because the demons wouldn’t stop. This prompted a 911 call, unknown to my parents, and I was taken away in the back of the sheriffs car in handcuffs to the hospital I hated being in.

I called home incessantly, demanding to know what they were telling my parents–which was nothing. I paced and paced and was sent an hour from home to a new hospital. A better one, in my opinion.

I got sleep there, something I hadn’t had in so long. And when I came out, sedated and still very confused, loopy, I followed butterflies who told me I should follow them. I spent hours walking without knowing I was walking. I took up a habit of wood burning and carving.

What I find most interesting about my journey is how it is to put into words all the things I experienced, so many of which I only have snippets of clear memories of. I have vivid feeling-memories of pain and voices and confusion, mostly. I tried to kill myself again, this time actively, but was saved. That was the loudest my voices ever became, and that was the result of stopping (all) my medication too quickly–a SSRI, an antipsychotic, and some anxiety med.

I have another voice, usually external but sometimes internal, who will ask me how I am. He’ll check up on me when I’m having a particularly hard day. That was the beginning of me seeing the benevolent side of these so-called demons, who I now refer to as false angels. He emerged when I started learning how to get in touch with my feelings.

So, I didn’t do anything drastic. I never ran down the street or screamed at people or openly talked to myself or to others so incoherently. So much of my experience in early life was internal, as protection, that my mental health expressed itself internally as well. It was rare my anxiety showed, or my depression. I have people to this day tell me I don’t “look” anxious, or behave anxiously–there are some people who I can see it in; they walk into class shaking or tapping as a soothing technique. They ask clarifying questions constantly or confirm their answer constantly, fearful of being wrong.

I didn’t know how to put my childhood into words, particularly not as a child.

One of the misconceptions about psychosis is that we’re all the same level of “obvious”. But that’s what we see in the news, or read about in people’s stories. It’s how we get killed by police using improper force out of fear. But not all of us go kicking and screaming into the hospital. My terror petrifies me, and so being fearful only paralyzed me. I didn’t talk to anyone, I didn’t fight the nurses, I sat in my corner of the hospital and listened to my brain rampage.

I wanted to share this so everyone knows where I’m coming from when I write these posts. It’s a place of understanding and also a place of not understanding; I’ve never been thrown on a cot and injected. I’ve never walked down the street with no shoes, homeless, talking to my voices and being arrested for trespassing. I’m still very disconnected from the very people I share so much in common with.

I think it’s worth celebrating the differences in our experiences, not just the similarities. Psychosis is notorious for taking over. It’s notorious for being unpredictable and obvious. It’s got some subtle undertones in some of us though, and sometimes it feels wrong to express this, given the hospital trauma–like cot injections– so many of us experience.

Thank you for taking the time to read this.

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Community, psychology, Supporting Friends/Family

The Tie Between Physical and Mental Health

Posted on January 28, 2020January 28, 2020 by alidware

In pursuing a degree in psychology, a couple depressive and psychotic episodes interrupted my original plan. In that, I’ve discovered I never really wanted a degree in psychology. In that , I discovered I’m stuck with it and must make the best out of it because starting over sounds excruciating.

And so I make this post in honor of all the adamant advocates who insist on equating mental health with physical health, despite the fact that they need very different treatments, have different levels of valid (or invalid) research, and that one is ostensibly more tangible and reliable than the other.

What’s the point?

I think sometimes when we are caught up in our head, we disconnect from the flesh and organisms which keep us breathing and conscious. Our body becomes a poorly oiled machine, and we creak and groan getting out of bed in the morning, and groan and creak getting in the bed at night. One thing which was missing from my mental health treatment in the past was a consult on my physical health.

One sleep doctor told me I needed to lose weight. That was the extent of the care given to my body after my last psychotic episode, even under the watchful eye of my psychiatrist, therapist, and physician.

And so I notice this huge disconnect in ourselves as well as in the health field. There is a reason many of us diagnosed have a higher percentage of eating highly processed foods, calorie dense foods, and refined sugar/corn syrup filled foods–it’s not just because these foods become a comfort (because they do), but also because dealing with voices and visions and mood swings take our focus away from the rest of the world, the rest of us, and without some gentle pushing and encouragement from the team around us, we’re not able to hop on the physical health track.

I did not gain one hundred pounds until my moods were so unregulated and my psychosis was so encompassing that I forgot my body even existed. This is after being a very fit, very active teenager and young adult. Medication with weight side-effects didn’t help.

What bothers me now is that doctors prescribe medications without also setting us up with a nutrition coach or a dietitian or whatever we can afford/our insurance will pay for, who can help us balance those debilitating side effects with healthier options.

I lost the weight because I was ready and because I did all the research about what foods start up metabolism, how restricting and counting calories is horrible for weight loss, and the importance of regular exercise. Within 6-8 months, I healthily lost half the weight and gained an incredible amount of mental stability for being off medication.

This has kept my depression at bay for the first time since I was eleven years old, wishing I could kill myself. I’m now 24. It has significantly reduced my anxiety, and has helped me manage paranoia. When I reintroduce a steady, less healthy diet for a couple weeks (such as a ridiculous amount of carbs, high amounts of refined sugar, and large portions), my paranoia ramps up, my panic attacks take over, and I feel miserable both physically and mentally.

Food isn’t just fuel for our bodies, it’s medicine for our minds. It keeps our blood sugars level, our energy converting, our organs functioning, and our serotonin happy–let’s not forget the abundance of serotonin that lies in our gut.

When we stuff ourselves with foods that raise our sugar levels and our dopamine levels, we crash and want more sugar. We get a lesser high each time, and a lower low each time; it’s like cocaine. The higher weight we get from fatty foods, the less movement we enjoy, and the more anxious and insecure we feel. This keeps us from experiencing the world, withdraws us from social activity, and that alone can ramp up experiences of any mental health condition.

And so pop-advocates are right: mental health and physical health should be treated the same in that both must be addressed in order for the whole person to be healthy. When we are so lost in our mind, we need something to ground us back in our physical body, and one way that can be done is relearning how to show compassion through healthy action toward our physical form.

It’s mistaken to believe what you put into your body doesn’t effect your mental health. It’s mistaken to believe that the majority of our struggle comes from chemicals; the fact is there are social factors, economic/financial factors, genetic factors, and physical factors. Some of these we have more power to change than we think, and physical factors tend to be the easiest, as hard as it is. When I stopped telling myself “well, there’s nothing I can do about it” in regards to my experiences, I found there was a whole hell of a lot I could do, not just to cope, not just to exist, but to heal and nurture all the undressed wounds I’d left bleeding for so many years. One of those wounds was my physical health.

What can we do?

It’s evident that changing eating habits is not a simple feat. It takes a lot of discipline and motivation and readiness–readiness being key. If discipline and motivation aren’t your thing, a good support team around you which you trust may work to gently encourage progress and give healthy reminders when your progress falters (because it will falter).

If you don’t have much of a support force, and your doctors aren’t much help, starting slowly will be your best bet. If you feel you aren’t ready to embark on that kind of a journey, don’t. Starting before you’re ready will only make you falter in your discipline. That will disappoint you and the discouragement will eventually convince you to quit.

So, Are you ready?

1) My first suggestion would be research. Read some stuff about food. The good stuff. Stuff about why carbs are good, why sugar is good, why certain fats actually help you burn stored fat in your body. I say start with this kind of research because it’s a reminder to you that food is good! There is nothing you need to avoid, only things eaten in moderation and with careful consideration. Things eaten for fuel, not out of emotion.

2) Next, find some foods that kickstart your metabolism. Foods like kale, spinach, raspberries, and blueberries, or spices like Tumeric. These are great pre and post workout snacks (and seasonings) that will help your body use up some of its fat storage.

3) Plan your meals. When I started my weight loss journey, I ate a kale, spinach, tofu (seasoned with tumeric) salad, topped with raspberries and blueberries for lunch. For breakfast, I ate an avocado and two boiled eggs, or two fried eggs in olive oil. For snack, I’d have a banana or protein drink, generally after a workout. For dinner I’d have a lean meat (99% lean turkey, or baked chicken, or baked fish (cod usually), a veggie, and a perhaps a cup of rice or other programmed starch/carb.

I thought I’d be hungry with this meal plan, as I was used to eating 3000-4000 calories a day easily, but I didn’t go hungry for a moment. The exercise utilized the fuel I put in my body, and the fuel properly energized my muscles and my mind. I gave up sweets only because I’d been heavily addicted and knew I’d compromise my health plan if I allowed myself to eat two cakes in three days as I had before.

4) Set a consistent workout schedule. I worked out 3-5 days a week, all around the same time. I started with bike riding again, and graduated to the gym, and eventually high interval training workouts. The thing to remember with exercise is that the more weight you lose, the toner you get, the more intense your workouts have to get in order to maintain the same loss. Starting slow can ease you into the mental and physical pain.

5) Remember your mental health. If anxiety or depression tells you not to go one day, and you really can’t convince yourself otherwise, don’t go. You still have an obligation to be compassionate with yourself. This doesn’t mean give yourself an excuse. This means accept that this day is painful and that you need rest. It means the next day may be painful too, but if your rest is productive and useful, the next day can be easier and you can return to your routine. If you take a restful week, that’s not a failure either. It’s you doing what you need.

With those five little things, I lost 56 pounds in about 6 months. My paranoia was much more under control, my blood pressure went down, my heart rate went down, my anxiety went down, and I haven’t seen my depression in almost two years.

This is not a cure. It’s an understanding that our physical health plays into our mental health, and if one is ignored, the other is sure to deteriorate.

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advocacy, science, Supporting Friends/Family, Voices

Hearing Voices: Internal versus External

Posted on January 25, 2020 by alidware

Something people who don’t hear voices misunderstand about hearing voices is that it’s not like sitting next to a party of five in a restaurant where you can generally tune out all the giggles and unrelated conversation and focus on the person in front of you. It’s more like that party of five arranged their chairs around you and take turns commenting on your posture, your date’s violent sexual thoughts, your wants you didn’t know you had, while also occasionally blurting a sentence that doesn’t make any sense, like “put that burrito on reservation.”

My point here is that ignoring it isn’t always the easiest or most necessary option. And to understand why this is a fact, we need to understand a little more about this.

Some people are really obvious about their inner experiences. They’ll be talking out loud or gesturing to no one. They might be laughing or crying or whispering. This is what scares people, both people, and what can make getting acquainted with our voices such a daunting experience; we’re aware (some of us) how we appear and that judgement is enough to warrant withdrawal. This tends to make things worse.

But let’s be clear: screaming at yourself at 3am probably isn’t the best way for your roommates to get to know you, nor is it a good way to get to know your voices.

It’s kind of a novel idea, to promote the “getting to know” process of things that don’t exist. But they do exist; they speak, they can have names, we can even have images to describe their non-existent physical features. They may not exist for your little brother or your mom or dad, but they exist for you and that’s still valid.

Psychiatrists and therapists aren’t trained in helping you with this process because school will tell them not to entertain delusions and to teach their clients how to cope with voices by ignoring them. This may be helpful for the clinician so they have a reason not to feel guilty when their client doesn’t remarkably improve, but it’s not always helpful for the client.

Ignoring needs to happen sometimes. But as a primary coping mechanism it sucks.

And so there’s something called “dialoging”, which I didn’t know about until attending a hearing voices workshop put on by the Hearing Voices Network. This is essentially someone on the outside speaking with your voices, getting to know them, their motives, their personality, and validating their existence. It’s for the voice hearer as well, so they can participate in a conversation instead of a shouting match. Because, again, what happens when you shout at someone? They shout back.

It’s also a common misconception, especially in clinical practice, that everyone who hears voices hears them externally.

I read a report of an experiment which examined this. They say that external voices have always been thought to represent more “severe” psychopathology, and to be more common, but that “empirical evidence has been equivocal”, meaning ambivalent. You can read for yourself at this link.

To summarize their study:

Some people experience only internal (coming from inside the head) voices
Some people experience only external( perceived as outside the head) voices .
Some people experience both.
In 1996 it was thought external voices were more severe. This project suggests, from observations, that internal ones can be more “disturbing, negative, persistent, involving, and commanding”.
Voices commenting and conversing observed (reported as) more internal.
“…no differences have been identified between internal vs. external hallucinators in other symptoms or levels of overall psychopathology.”
Another study, (cited Stephane et. al 2010) “found that schizophrenia patients with only internal hallucinations performed more poorly than those with only external hallucinations on an internal ‘say/think’ source memory task, suggesting that internal hallucinators may be less able to discriminate between internal versus externalized stimuli…”
Those with internal voices were observed to have more insight into the self-generated nature of their voices.

Why is any of this important? Well, it’s important for clinicians to read these kinds of findings and realize that experiences vary, and that one-shot generalized treatment WILL NOT work.

But it’s also important for those of us who do hear internal voices. First of all, it’s validation. Maybe you’ve been disregarded in the mental health system because your experience is perceived as “lesser”. Remember when we talked about the Soggy Boxes and the hierarchy of the mental health system? If you don’t, take a quick read at an older post of mine entitled The Soggy Boxes and The Variation of Us.

I’ve personally been reluctant to ever tell anyone about the internal half of me, because I knew the standard the system held. I also didn’t know they were voices. I did, but I didn’t.

So all this really does is remind us how different and similar we can be with each other. It also proves that the stale mental health system needs to readjust its understanding of life, of humanity, and experience in order to catch up with where we are. They’re behind US. It’s not the other way around.

If you are struggling with this currently, I’d encourage you to reach out to someone you can trust. If you trust no one, find the person you can trust the most. If you know someone who has been through similar things, reaching out to them may be the most helpful. If your options are limited, feel free to email me (info here). People seem to like connecting on Instagram better lately, so you can also reach me via my social media handles (info below).

People are fearful because they don’t understand. The nice thing is that there are many people who will make an effort to understand if you can have the patience to teach.

If you are a voice hearer and are comfortable with sharing your experience, pop it down in the comments below. If it’s a long story and you’d like a guest blog post spot, contact me! I’d love to feature your story on here.

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Voices

Hearing Voices

Posted on January 23, 2020 by alidware

It’s been difficult to write lately because my father is in the hospital and I’ve been running around a lot, unrelated to his hospital visits.

I really want to do a post about internal voices and external voices and why the internal ones have been considered “insignificant” to clinical practice for so long.

Most of us think about hearing voices as external, and a lot of people do, but what’s been found in clinical assessments is that the question “are you hearing voices” is quite vague.

Sometimes clinicians will ask “are they inside your head or outside?”. If you answer inside, it’s noted but not questioned further unless the nurse/intake/doctor is doing a thorough job.

So what’s been found in surveys is that quite a few people who answer “yes” to the hearing voices question heard them inside and outside of their head, or mainly inside. This prompted a few observational studies about how internal voices can differ from external and how that reflects a persons behavior.

This subject is interesting to me mostly because my voices have been both, but more heavily internal. Things are very bad when they’re external. There are reports of those who learned to live well with their voices, like Eleanor Longden, who mentioned wellness has prompted their voices to become more internal and less disruptive.

And we don’t talk enough about these heavy experiences. We don’t discuss it in a way we would discuss a topic in class or some juicy gossip with a friend and that’s what I think should change; if we can create a space where talking about these experiences, good and bad equally, in a nonchalant manner, it may just change the way others view mental health.

What do you all think? Is this an interesting topic you’d like to have some discussion on? Let me know on my social media or in the comments below.

Ive had some people contacting me on Instagram recently to learn more about my story and to ask me questions about my experience. We’ve supported each other’s pages and are communicating about advocacy. So if you’d like to do the same thing, you can reach me on Instagram: @written_in_the_photo or Twitter: @Philopsychotic.

advocacy, science

How Important Are Your Psychiatric Medications?

Posted on January 20, 2020January 20, 2020 by alidware

This question is for all of us, including myself, without much judgement. There are those who quit their medication and are fine, those who quit and are not fine, those who want off but are worried about withdrawal (which can trigger an upswing of serious symptoms again), and there are those who want off but their doctors disagree.

For those with any diagnosis related to psychosis, one thing you’re told especially is to stay on your meds. The reasons for why are a little less clear. This is what research says.

The Papers:

I found two articles on this topic, both Meta-Analysis (they’ve collected a group of studies and used statistics to quantify the average results of all the studies)

They both discuss studies assessing whether long term antipsychotic treatment maintains sufficient and healthy remission for individuals experiencing first-episode psychosis. There are two conclusions you will often find when searching databases for this kind of research: 1) long term medication works and 2) long term medications interferes with progress. One of these analyses kinds of lands in the middle, and the other is 100% supportive of medication.

We’ll discuss possible reasons why both valid analyses come to such different conclusions, and what this means for us.

1. Maintenance Antipsychotic Treatment Versus Discontinuation Strategies Following Remission From First Episode Psychosis: Systematic Review.

This analysis follows studies which look to understand the risks of maintenance (Long-Term usage) compared to risks of discontinuing medication AFTER remission in first episode psychosis. Seven studies were included.

Now, they looked for specific things, particularly comparing hospital relapse rates and hospital admission rates of those First Episode Psychosis individuals who maintained antipsychotic medication to those who were discontinuing their medication. For the studies which used an intermittent treatment approach, the participants medication was discontinued by 50% every two weeks. For those exhibiting prodromal symptoms, medication was reintroduced. In the crisis-based approached, medication was only reintroduced upon a full-blown episode.

Ultimately, higher relapse rates and hospitalization rates were seen in those discontinuing medication.

Two of the studies provided information on psychosocial outcomes like employment status or quality of life measurement.

I encourage you to read the analysis for yourself. I found it shocking that things like an individual’s place in society, their level of function in their community, their sense of purpose, the amount of support available, was not included. Yes, medication discontinuation seems to increase the likelyhood of relapse according to this analysis, but what could be the reason for this? Only medication? Or what about lack of support? What about the fact that tapering off medication with 50% of the dosage broken down every two weeks is indeed quite fast? Perhaps the speed effected the results of that one study.

Another rather glaring fact which makes me worry for the integrity of the analysis is the possible bias of the authors. One of them recieved support from Janssen-Cilag (think Haldol) and Otsuka Pharmaceuticals (think Abilify). This author also was an investigator on trials funded by AstraZeneca (think Seroquel) and Janssesn-Cilag. He holds a Pfitzer (think Prozac) Neurosciences Research grant.

Another author received sponsorship from Otsuka to attend a conference, and has shares in GlaxoSmithKline (think Paxil) and AstraZeneca. The last author attended meetings supported by Sunovion Pharmaceuticals (think Lunesta).

The only inherent problem with this is conflict of interest. There are times many researchers have been caught falsifying data or misreporting data with the agreement that they would get paid extra by the pharmaceutical companies funding their research. This is also common in the world of regular medical science and was particularly a catalyst for the Opiate Epidemic. Think Purdue Pharma.

This is the largest issue medical science faces today.

2.Improving Outcomes of First-Episode Psychosis: an Overview

This overview looks at possible prevention of psychosis, which is curious in itself. You can read in the paper all the different steps and stages they present which could, with further study, advance the way psychosis is treated and/or identified in an individual. They acknowledge that despite all the preventative strategies currently in place, often people will fall back into old symptoms following their first episode.

They updated a 3-trial meta-analysis to 12 trials and found that relapse rates while undergoing preventative care strategies were, on average, lower than relapse rates of those undergoing standard treatment. However, they found that there was no substantial meta-analysis support that showed integrative preventative strategies significantly improved anyone’s potential rate of relapse in comparison to a standard level of care.

They also found that the hypothesis that each new psychotic episode “damages” the brain or is “neurotoxic” to the brain and therefore “progresses the disease” has no significant empirical evidence to support it. This hypothesis is known as the “neurotoxic hypothesis of psychosis” and I’ve heard people cite it quite often.

The overview goes on to discuss future studies and cannot conclude that any one way is the correct way. They advise against using certain medical strategies that observe and study physical illness to observe, study, and treat mental health conditions; the brain varies more so than the body in more ways than one, and to assume that both can be treated equally is pretty far fetched.

There is a lot of theory in this overview and I’m not sure how much of it could be put into practice. They discuss some ways in the article, if you’re interested, including areas of support. Accordingly, their authors were not previously supported by any pharmaceutical companies.

And so where does this leave us? We have empirical evidence that medication can halt a crisis, but it is unclear, according to the second study, if we’re simply prolonging the inevitable or helping cease the progression of something. In the case of prolonging the inevitable, it would seem more humane to let people ride through the torture and support them in other ways. In the case of ceasing the progression of something–well, it seems like we’d have more reliable and verifiable data if that were the reality.

I stopped medication because I don’t like uncertainty. And the truth of medication is uncertain. I stopped medication because I don’t like being lied to. And much of medication research and marketing is based in lies, even small ones.

This may not be the path for you. What makes your medication important to you? What makes it torturous for you? Do the risks outweigh the benefits? Would you like to discontinue them some day?

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advocacy, Community, Emotions, Voices

The Power Of Un-Positive Thinking

Posted on January 19, 2020January 19, 2020 by alidware

I profess that I am not the type to belt out cheesy posts. I don’t put cheesy one-liners on Twitter, and I don’t post mushy paragraphs on Instagram. I don’t spend a lot of posts talking about the bad things about schizoaffective, or what kind of medications I’ve taken. It seems that a lot of people think that’s what advocacy is about, though: cheesy posts about staying positive, the struggles of living with a mental health condition, and stressing the importance of medication.

It gets boring.

And so I’d like to challenge everyone in the mental health community. I’d like to challenge this belief that in order to lift each other up, we must constantly mull on our struggles so that others can reach out and spurt lines of hope we won’t believe in. I’d like to challenge those advocates who don’t have any experience with having a mental health condition but still insist on belting out “you can do this” posts every five minutes.

The thing about negative thoughts is that pelting positive thoughts at them won’t change the negative thoughts’ status. They will still be louder, they will still be heavier, and they will still be more constant. It’s kind of like trying to tear down a brick wall by chucking oranges at it. It would take millions of years to make a dip.

Sometimes it’s just not enough to wake up in the morning and tell yourself the day will be good. Sometimes it’s not enough to remind yourself that life is grand, even when you feel the opposite. Sometimes it’s not about thoughts as much as it is action.

And so I wonder how many of us have given negative thoughts a chance? Have we tried observing the pain when we wake up in the morning and not placing judgement on the thoughts (or voices) that tell us we’re worthless or useless? When the pain runs deep, have we tried breathing it in?

The way to take power from negative thoughts isn’t to replace them with positive thoughts. It’s to show them that you are not submissive. That doesn’t mean arguing or fighting with yourself all day. Save some of that energy. It means accepting their negativity, accepting the struggle, and moving through it not with the intention of “reaching the other side”, just with the intention of braving the moment.

All we really have are moments. They’re brief, seconds long, maybe nanoseconds long, or maybe it’s physically impossible to quantify them. But they are all we really have. And so the pain in that single moment is very real, but beyond that there is nothing else. Before that, there was nothing else. We experience time in a linear fashion, which means existing second by second, moment by moment, feeling by feeling, and so although it seems like pain strings along for years, that’s really just an accumulation of painful moments.

We observe time passing like bullet points in an essay. The only difference is the document is read-only, and there’s nothing we can edit. And so we read each bullet point and we get a feeling from it, we experience that one bullet point, and we move on to the next one.

But in life we get caught up in one bullet point and suddenly every bullet point reads like that first one. We can’t edit, so we feel helpless, and we can’t stop reading because life doesn’t stop moving. We can’t change how we feel about the pain and we can’t change the nature of the pain. The only thing we can change is our reaction.

And so I encourage all of us to be compassionate to these passing moments. They’re stuck to you as much as you are stuck to them. The more time we spend hating these moments, or running from these moments, or arguing with these moments, is just more time not spent living the way we’d like.

There’s no easy answer for living with a mental health condition. There’s no magical pill, there’s no magical therapy, and there’s no magical, positive quote on Twitter that will cure you. Life has pain, life endures pain, and pain isn’t a disease you can cure. So that one account you follow with 30 thousand followers that spouts out ropes of sticky, cheesy, positive one-liners is disillusioned. It fills people with this false sense of hope that if they just think positively long enough, something will change.

That’s just not how life works. I suppose the internet is quite infamous for distorting reality.

We shouldn’t run from pain. We shouldn’t fight it or disregard it or try and shove it away in a corner to rot because it will never rot. It’s non-perishable. When we speak about our experiences, let us talk about the negative and positive equally. Let us share things in a way that inspires hope not because our story concludes with general well-being, but because we’ve learned something from it, because we’ve discovered this balance in life that’s required to exist. Let us inspire people through our bravery in embracing pain and not just through our ability to share what’s happened to us. Let us empower each other through our confidence in living life as everyone else, not just through our living life while diagnosed.

Many of us write about mental health. I encourage all of us to scrutinize how we present our material, who we follow, who we re-tweet, or re-post. I encourage us to evaluate what our goal is in our advocacy work.

There is no right or wrong way to share your life or to lift people up. But some ways are productive and some get dull after a thousand re-tweets.

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travel

Beautiful Ways to Be Well

Posted on January 18, 2020January 18, 2020 by alidware

Thank you all for being so patient as I had a brief break in our regularly scheduled (blog) programing.

One of the number one things I’ve started doing for my mental health within the last year is hiking. I took a hiking course last semester after learning my college wouldn’t let me take another gym course. I lost over 35 pounds in those courses, and knew if I wanted to keep the weight loss up, I’d need more rigorous exercise activities alongside my new gym membership.

I think a lot of us, out of habit, become reclusive because our mind wars against us and we start feeling uncomfortable in the world. If you hear voices, they might comment on everything or on your being near people as mine have. If you have social anxiety, you might fear everyone is judging your posture, your clothes, or your mannerisms. If you have depression, getting out of bed may seem unnecessarily arduous. With any mental health struggle, everything takes extra energy and most of the time we don’t have that.

What helped me break this cycle and understand life only has the limits I place on it was hiking. Seeing formations of the earth that extend up into the sky, that touch the layer of clouds and remind me how small we are in the universe helps me break free from the negativity in my head and spend time in awareness outside of myself.

That being said, it took a couple years to build up the courage, confidence, and wellness needed to step into the fresh air and adventure. I think people often tell us “exercise will do you good” or “if you just got out of the house every once in a while, you’d feel better.”, but they don’t understand you do need a level of wellness for that. Getting outside regularly doesn’t cure anything; it’s a sign that stability is nearer than before.

I worked on myself for 2.5 years before my anxiety and paranoia let me hike through Big Basin State park. And in Yosemite national park these last few days, I still took my PRN anxiety medication with me, as I had a string of attacks last week unlike anything I’ve experienced in 4 years.

Nature has helped me get back on track. Breathing in untarnished air and feeling life at its most raw.

And so, dear readers, thank you for for being patient, as I stated earlier. I’d like to share some of photos I took with me and my boyfriend. We’ve been together for 5 years almost, with a year of us kinda being together but not really. That’s a whole other story.

We plan to visit all the national parks around the U.S and some outside of the U.S. Here are some of my photos of Yosemite National Park, shot on just my iPhone. Others I took with a Nikon DD300.

Next week we will resume scheduled blogging. If you ever get a chance to experience Yosemite in the winter, it’s worth the temperature drop.

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