What’s So Scary About Schizophrenia?

I’ve recently added new people in my life. I’ve branched out–taking on some endeavors that have put me into contact with people outside of my normal zone of relationships. This is, I think, a wonderful thing. I look forward to these new adventures.

One thing has come up, though. I am diagnosed with schizophrenia. I’ve been fortunate to have come across people who completely understand and totally get that there are a lot of misconceptions about schizophrenia.

Schizophrenia is, perhaps, one of the most stigmatized psychological disabilities. I can’t expect everyone to know everything. So, for those who happen across my blog, I’ve put together this little post to assure you that there’s nothing scary about schizophrenia.

For those who are unfamiliar with this psychological disability, I wanted to share the video below with you. It’s by Dr. Eleanore Longden. Last I knew, she works at the Psychosis Research Unit in Manchester, UK. If you have further questions about psychosis, I do encourage you to look up her and her colleagues’ work. It is excellent stuff.

The theory behind Longden’s work is that psychosis is a result of trauma. Using therapies–like Cognitive Behavioral Therapy–can help a person live with psychosis, according to Longden’s work and life.

There have been theories like this before when, for example, Freud posited a sort of loop between the psychological and the social which brings about certain psychological disabilities.

To folks who are new in my life: I have been in therapy for almost two years. I have taken medication for much longer than that. I am a so-called “high functioning” person diagnosed with schizophrenia.

Sure, I’ve had my struggles. But my struggles are not scary to you. At least, they shouldn’t be. I think of managing schizophrenia just like managing any other (less stigmatized) illness. It requires care, attention and focus. I have to attend to certain things about myself.

There are a few things that are, if I may say so, beneficial to being diagnosed with schizophrenia. I can understand and empathize with other people with psychological disabilities. I can appreciate all kinds of diversity in the world. I can understand new, innovative and unique thought processes.

The experience of hearing voices, having delusions and being paranoid–all of which may be present in a person diagnosed with schizophrenia–are not at all uncommon, actually. Tons of people have had experiences of slight paranoia, for example. (Think about an instance where everyone gets quiet when you walk into a room. Were they previously talking about you? If you wonder that, you have experienced an ounce of paranoia.) The difference between me and a person not diagnosed with schizophrenia is that my experiences have been a touch more extreme and have, in the past, interfered with my daily life.

You and I, then, are not so different. We are on the very same spectrum. I just happen to be at the 1% mark on the bell curve. But we are basically the same. Remember that next time you worry about a person being diagnosed with schizophrenia.

This Portfolio Is a Relic Of What I Once Was

This is my blog. The rest of this website is my e-portfolio. I made it several years ago. You can browse around and see my various, mostly professional, accomplishments.

At this point in my life, the portfolio part seems to be a relic of what I once was.

Around 2008, I had my first psychotic break. It just hasn’t been the same since then. I was on the path to become an academic–aiming for a PhD in Philosophy, with the goal of becoming a professor. I had to leave school, which I loved, and go through the years-long process of recovery. I don’t know that full recovery from my diagnosis of schizophrenia is possible for me.

I have a long-time counselor who suggests I simply modify my expectations in life; to live life as a disabled person. I resisted that for a long time, but now I think, after various trials and tribulations, that this is wise advice.

I plan to still maintain this blog and keep this website for a while. It goes to show that someone with promise–someone very career-oriented, who excelled in school and work–can become disabled and have their dreams dashed.

People with disabilities are often looked down upon. People don’t often take kindly towards them, especially if one has a disability like mine, which is heavily stigmatized. However, writing is one thing I can do (when I have the energy) and it’s something I love. So, I aim to continue doing that here if and when I can.

The past year has had its ups and downs. I started an online magazine which did pretty well but that I can’t keep up anymore. I tried to start an organization, but I simply cannot do the work necessary to follow through. It’s not my choice to be disabled. I simply am. All the evidence here will show I tried my darndest to be anything but disabled. My family can attest to my disability and the evidence–as well as my family and friends–can testify to my constant desire to try to keep plodding through.

This isn’t a pity party. This is how I feel right now.

For now, I leave you with this image I found on the internet. I post it partly tongue-in-cheek. But it’s how I will be remembered, having been a pretty good philosopher, an award-winning poet, and a “failure” nevertheless.

Transcending My First Memory

I’m going to share with you some things that have been kept quiet in my family for many years. It starts with my first memory. My first memory is of my dad beating my mom. It’s a sad memory and I’ve rarely told it to many people. I can still see my mom, in desperation, trying to fend off my dad.

We never talked much about abuse in my family, but it regularly occurred. It’s time to shine a light on this and move forward.

I am a survivor of traumatic neglect and a witness to domestic violence and child abuse.

I was a quiet and somber child, very observant. I rarely got in trouble. I also experienced a lot of anxiety.

At about the age of 8, I was asked by a judge who I wanted to live with–mom or dad–as my parents went through a divorce. I picked my mom. I thought this would be better and in some ways it was. However, my mom soon married another abusive man, who not only chased her around the room with an ax, but who also abused, in various ways, my two younger brothers.

As a bystander, as a child, I didn’t know what I could do. But when the man my mom married came into my room and told me to pull down my panties, I knew what to do. I pushed him off the bed. But there was little I could do to prevent the abuse happening to my mom and brothers. Occasionally, the man my mom married would want us other kids to participate in abuse and torment. I always refused.

The man my mom married died in a blizzard. I’m sure this was sad for my mom, but it was liberating for me. I attended his funeral and, when a box of Kleenex was passed to me, I looked at it like, “What do I need this for?”

However, I had to live with my dad again for a while. It was during this time I experienced neglect. I was about 12 years old. Although my dad sometimes cooked–and I remember the things he did cook–there was often very little in the fridge. I remember ketchup sandwiches. I even remember stealing money from my dad to buy food from Taco Delight.  Some of my friends’ parents noticed these things and reported them to my mom, who was doing her best to tie up loose ends with the man who had died in the blizzard.

When I was about 13, while living back with my mom, I experienced my first bout of extreme sadness. It was depression.

At 14, I became pregnant. I also moved to a different state–Florida.

Florida has a law which states that every county has to have a school for teen parents. I attended one–now called The Chiles Academy. Of course, I gained a high school diploma, but I also took parenting classes and learned about various kinds of abuse and neglect. I tried to raise my daughter differently from how I was raised. I went by the book. I never, ever wanted her to experience the things I experienced.

My time at The Chiles Academy was great. My relationship with my daughter, I think, was great. After four years–and after meeting many different politicians and leaders–I graduated with a high school diploma.

I decided to go to college. I applied for Daytona Beach Community College (now, Daytona State College). I did fairly well in all my classes–except Math. However, I decided I was ready to transfer, so I applied to Stetson University. I was accepted.

Being a non-traditional, working class, commuter student at Stetson was, well, different. I didn’t come across many other students with my background. Very few of them could related to the experiences of being a young parent.

And, all the while, I was barely treated for the abuse and neglect I experienced growing up.

However, even though I didn’t make too many friends on campus, I did find solidarity and support in the campus culture. Many Stetson faculty, staff and students are involved in the community and social justice activities. I got involved in social justice issues.

I wrote two theses: one on facial affect (for psychology) and one on colonialism (for philosophy).

Not long after I graduated undergrad, my dad got sick with cancer. I had to travel back to Texas to deal with his death.

Soon, I applied for graduate school at the University of North Florida. While there, I did very, very well in academics, teaching and research.

Still I had not gotten help for my abuse.

I had learned to be distant from my feelings. I didn’t take time to process things and transcend them. However, I spoke out about injustice toward anyone else whenever I could. This was empowerment for me. It was as if I was making up for all the times I couldn’t do anything for my brothers and mom. I sometimes wonder if other people who are passionate about social justice are survivors like me.

While in graduate school, I had my first experience of psychosis. Of course, the current routine is: drug them up and hospitalize them.

I wasn’t seen as a survivor of horrific things who had accomplished so much. I was seen as a “schizophrenic.”

New research sheds light on the traumatic experiences people have which lead to psychosis. Instead of seeing these as “ill people” with an “incurable brain disease,” we should look at them as potential survivors of domestic torment and adversity. After all, if you don’t think I experienced adversity, you don’t know the statistics on teen moms. Merely graduating high school is a very real accomplishment for people with my background, let alone going on to college and grad school.

If you glance around my portfolio, you’ll find I have indeed accomplished a lot. My most recent accomplishment is what I’m doing now: transcending my negative childhood experiences.

 

 

On Stigma

Stigma–or, rather, discrimination–regarding mental illness is very common. Most people, alas, are unaware of the stereotypes and biases they hold in their head regarding mental illness.

I have been an advocate against stigma and discrimination for several years. I’ve seen far too many instances of bias and discrimination. I couldn’t help but be an advocate.

I have volunteered with organizations and have watched others grow. The organization I am currently watching–and it’s one to look out for–is Students With Schizophrenia. Founded by Cecilia McGough (Penn), Students With Schizophrenia aims to assist and help college students diagnosed with schizophrenia. Look for Students With Schizophrenia at a campus near you.

Does Finding Truth Require The Right Attitude?

I’ve become laid-back in my old age. I think I’ve also become more receptive to truth. In my quest to treat and think about schizophrenia, for example, I’ve turned in my old, piercing, rigorous mind and exchanged it for a more humble yet adventurous attitude.

In the world of academia, we often find disparate conversations going on. We find scholars who are unable to communicate with non-academics–but, worse, we find academics unable to communicate with each other.

Since I’ve always taken an interdisciplinary approach, I have tried my best to keep up with conversations in many areas of study. Interdisciplinary work is difficult. One reason why is because one has to become a translator of academic jargon–from psychology to philosophy–and then, for me, a translator from academic jargon into ordinary language.

I do my best, as any translator does, but I may miss the tiny nuances when I translate into ordinary language.

These piercing minds–which I used to possess–give us these conversations. It’s an attitude toward truth that most scholars have which constructs towers of babble upwards towards to heavens.

As I mentioned previously, I’ve taken a different approach to truth these days. I’m fond of pragmatism–in a nutshell, what is true is what works. Pragmatism is a world-centered approach. It isn’t looking for some abstract truth-in-the-sky. It is looking for truth in the world.

But is there a specific attitude one must have in order to be receptive to truth? I think there may be. One must, first of all, be an adventurous explorer, willing to try new things. In my quest for treating schizophrenia, for instance, I have had to be open to trying new medications, seeing if they work, and trying new therapies. I even prayed and undertook an exploration of Christianity because Christian psychology can re-structure cognitive processes. My exploration and willingness to try new things will be proven to work for me if my symptoms diminish over the long term.

In addition to being an explorer, one must have the attitude of a shred of skepticism, too. I know that treatments that may work for me may not work for everyone. I have to discuss progress with other people with mental illness and explore large-scale studies to see whether my treatments work for others.

Notice I focus on what works for me. Whatever works is what is true. Truth is what happens to an idea I may have. My idea becomes true just when it works.

I don’t think I need to have the piercing mind, engaged in the harsh minutia of conversations in academia in order to find truth. I just need the right attitude and the ability to explore.

On Paranoia: A Brief Reflection

I have a friend with mental illness who thinks that “the powers that be” intentionally shut certain people down by making them go insane. My friend thinks this when my friend is healthy.

I want to think a bit about paranoia: its psychological causes.

I have delved into the literature on paranoia and psychosis in general and found it, quite honestly, unsatisfactory. I propose that paranoia, in at least some cases, is caused by subliminal or unconscious (as in, subconscious) threats. Then, when these threats come to the fore, they bring with them out-of-control beliefs that constitute what we know as paranoia.

Take, for example, a person who is living their life in academia (to take an example I am familiar with). This person, we presume, has the right to academic freedom, a subset of free speech. This person–call her Sally–creates academic articles that are transgressive to current political understandings. They, theoretically, undermine the whole of a nation. Sally goes on with her life. It’s just an argument, after all. Possible implementation is for someone else. Thus, Sally herself is no real threat when it comes to overthrowing a government.

Years after creating her argument–that is, her academic paper–she starts to become psychotic, triggered by something. Suddenly, she thinks the government in many ways, shapes and forms is out to get her.

What has happened here? Sally, who isn’t a threat, knows that her ideas could possibly overthrow the government if put in the right hands. But Sally herself was simply practicing free speech. In her psychosis, however, Sally knows she isn’t a threat, but she thinks other people are out to get her, anyway. She believes this because she knows that the assessment of threat has been imperfect in the past. Now, Sally is fully paranoid.

Buried within Sally is the unconscious idea that her own thoughts may be used against a government and, explicit to her, is the belief that this government is now out to get her because of it. Sally has a false belief. No one is out to get her. Panic and fear arise in her, however, because she intensely believes she is being persecuted.

This is what I think of as the landscape of paranoia. Only time will tell if my understanding is correct.

UPDATE: Here’s an account of a psychiatrist who experienced paranoia, which bolsters my view. And this patient/doctor recovered!

I Was A “Very Stable Genius.” Then I Developed Schizophrenia. Now, I’m An Unstable Genius.

Ask anyone who worked with me. I was 100% philosophy, 100% of the time. Effort and study creates genius. And I think I was one. A stable one, too.

I was in the middle of my graduate thesis when madness creeped up on me. It began slowly, with things I could handle, like derealization. Then, one day, I cracked. I was triggered by something in an e-mail to me. I responded by joking about it, but it really put unwanted thoughts in my head. I didn’t know how to handle unwanted thoughts, so I tried pushing them away. Little did I know that when you try to push unwanted thoughts away, they just become stronger. This quickly escalated into OCD with psychotic features–then schizophrenia.

I was full-blown mad. Again, ask anyone who was around me at the time. I was also a full-blown genius. The current going theory is that people who experience the kind of anxiety I experienced, while being top-performers, are the best of the best.

I don’t think I’ve lost any cognitive function, which sometimes goes along with schizophrenia. And I’ve been studying ever since I was diagnosed. As I said, effort and study makes genius. That, along with flexibility and imagination, gives you people like John Nash, an unstable genius.

I’ve seen memes recently mocking the president for calling himself a stable genius. Perhaps he is. I certainly haven’t mocked him for saying this.

But it’s important to understand a two things: (1) genius is about work. One doesn’t typically become a genius by not investing time into one’s area of expertise. (2) there is nothing wrong with being a little unstable. I have been known to become psychotic. So has John Nash. Each of us has accomplished things in life–and he is what many would think of as a true genius.

What many people are worried about is whether the president will do something rash in his alleged instability and, for example, bring us to war. He could. But he could also just be performing Madman Theory, which would not only scare some of us, but also our enemies. Either way, instability does not necessarily equal violence, so trying to guess the probability of the president pressing the button is currently, with the information I have, all for naught.

 

How I Learned To Stop Worrying And Be At Peace

Despite the fact that I have been exhausted for the past couple of weeks, I have, in general, been at peace with myself for several months now. You may not think that a person who fell from grace when they developed schizophrenia would be at peace. But I am. In fact, I’m more at peace than when I was an aspiring professor, a TA, an RA, making straight A’s in difficult courses, and so on.

When I was in academia, I was often surrounded by critical eyes and subjected to harsh judgements. Even though it may sound silly, I often thought: Am I too fat? Am I too ugly? Am I smart enough?

I don’t know that my standards have gone down at all. But I have learned that having ambition, being excellent in what one does, and having aspirations does not mean one has to be harshly critical and judgmental. I have, in short, been around a lot of assholes who cloak their asshole-ness in terms of being intellectual. I’m certainly not saying everyone I’ve met in academia is like this, but it’s been too many for me to say it’s just happenstance.

Part of this learning to be at peace, coming to terms with myself and accepting myself as I am has been a result of going to counseling. I have a very excellent counselor. She has taught me to be more in touch with my feeling and emotions while not giving up my brain.

The result is that I’ve been able to connect with people in ways I hadn’t been able to connect before. And this has often led to interesting intellectual conversations and connections.

These days, I’m interested in a lot of things. But one thing I’m interested in is quelling our desire for harsh competition, negativity, and harsh judgements and instead focusing on cooperation and care. I have found—and evidence shows—that cooperation, not competition, leads to more fruitful results, anyway.

Call Me C.S. Lewis: An Unlikely Convert

Long time readers may wonder about my sudden shift to writing about Christianity. I’ve converted. You may wonder why. So, I’ll tell you.

About six months ago, I had a psychotic break. It was severe and there are possibly some readers here who witnessed parts of it.

One evening during my psychosis, which lasts usually a week or two, my mind felt like it was going to shatter. It’s hard to explain what it’s like for your mind to shatter, but it’s horrible and scary. You lose your whole identity. I seriously felt like I was going to be in long-term inpatient care. That’s also terrifying.

Normally, I would have gone to the hospital. My first urge was to do just that. I would be, possibly, injected with something like Haldol, and, hopefully, stabilized. It usually takes going to the hospital in order to re-gain any sort of coherence when one’s mind shatters.

However, no one was really around to get me to the hospital. All our vehicles were gone. I couldn’t very well take myself and I didn’t want to call 911 because I thought I wouldn’t be mentally present by the time they showed up.

All of this went though my head very quickly.

I felt my only choice was to pray. They say there are no atheists in foxholes.

I got into my bed and prayed. I said, “God, please help me keep my mind together.”

I was willing to do my part, if and however I could. But I needed God’s help.

As I prayed, my mind was shattering. I was losing my identity as I prayed. The only thing I knew about myself was that I am a woman. So, I prayed to God, “I know I am a woman.” That’s as much help as I could offer God.

I slowly fell asleep.

In the morning, my mind was healed. There was no psychosis whatsoever. No shattered mind.

I don’t currently know how long this healing will last. I don’t know if it’s forever or not. I still take my medications and go to counseling. But, that night, I believe I experienced a miracle. So, I’ve converted.

Review of the Past Year

Last week, I was in therapy and the topic of more daily tasks for me to do came up. After reviewing my past year, I think I’ve remained pretty busy!

For example, in the past year, I was:

-Involved with NoDAPL and received a letter from President Obama on the matter.

-In regards to NoDAPL, I was published in the Daytona Beach News Journal.

-I was published on the Ghost Parachute Blog 3 times.

-I wrote a book.

-I edited an international philosophy journal.

-I was on Team Bernie during the primaries.

But most importantly, I have remained focused on my mental and physical health.

Living Openly with Schizophrenia

In case you haven’t noticed, I live openly with schizophrenia. I came out publicly to all my friends and everyone in my life over a year ago. I was welcomed warmly. I thought I would lose friends, but I didn’t. That just goes to show what great friends I have.

It’s always difficult meeting new people, though, and telling them. One never knows how they will react. There’s a bunch of stereotypes and misconceptions about schizophrenia that people have.

One thing I often worry about is dating with schizophrenia. I read a study that 70% of people would not marry someone with schizophrenia. So far, so good, though.

I know it probably seems like I function pretty well because I can write. But I do live with daily struggles, and have a new treatment plan for this year, which I am planning to follow. I have never had to manage a serious health condition before. Growing up, I was always pretty healthy. But I’m getting a handle on it.

Right now, I don’t work. Every time I have tried to work–eight times, since becoming ill–I have ended up in the hospital. My doctors don’t think I can handle the stress of working.

Coming out publicly about my living with schizophrenia was one of the best things for me. I couldn’t keep such a huge secret and major part of my life from my friends. It was too much of a burden. I know other people keep quiet about their illness, but coming out was the best decision for me.

Parity in Medicine Means Parity in Motives

There’s a lot of talk about parity in medicine, especially now during Mental Health Month. Brain disorders are treated differently than other illnesses, so there’s differences in policy, funding, and so forth. But when we talk about parity, we also need to keep in mind that, for carers, nurses, doctors, and other non-disordered people, we need parity in motives.

I’ve come across many people who seem to just want an ordered world–a world free of psychotic people. These people are not acting from the motive of caring and concern for someone who may be suffering. They are acting from other motives. When we think about treating brain disorders, or when we think about possibly curing or ridding the world of them, we need to search our motives, and make sure they are the same for any ill person.

Sometimes I think psychosis simply bothers some people, and they feel the need to rid the world of it. This is not the motive one wishes to move from.

Neuroskeptic on Swedish Study

Everyone’s favorite neuroscientist, Neuroskeptic, comments on an interesting study which involves adoption and schizophrenia.

I’ve mentioned that schizophrenia is currently considered a bio-based illness. And I am doing research on the biopsychosocial model, which states that schizophrenia can have multiple causes. But, of course, the biopsychosocial model is not in fashion right now. The research dollars go to what’s trendy, and Engel is not trendy right now. (No matter how much social science evidence we may have.)

This study looks at children who had ill biological parents, and were adopted. It found a decreased risk in developing schizophrenia.

Do take a look at Neuroskeptics’ blog post, and consider reading his blog more often! (I have been a reader since grad school.)

Causing Psychosis: What We Can and Can’t Know

I want to argue, using the biopsychosocial model that, for any case of psychosis, we cannot, currently, say for sure what the ultimate cause of it is.

The biopsychosocial model can be thought of as both a theory of causes, and a theory of treatment. When thought of as a theory of causes, one looks at biological, psychological, and social factors involved in the development of psychosis.

We may find that, for example, there’s excessive pruning of neurons in the brains of most people with schizophrenia. But we may not know why that happens. It could be they are born prone to developing psychosis. It could be they are neurotypical, and have experienced a lot of hardship. It could be that, psychologically, they are vulnerable to stressors.

These can all be causes, and they can all contribute to one developing psychosis. For any individual person, they may not know what caused their own psychosis.

Think of global warming. We know that the Earth is warming at alarming rates. But, at any given place, it may be warmer or cooler. Just because one area experiences warmth or cooling doesn’t mean we can assign this to global warming. Global warming is an effect that is broad, and covers the entire Earth.

In the same way, psychosis may affect individuals, but each individual has had a different upbringing, social environment, experiences, and each individual reacts to their environment in different ways.

For some people, the biomedical explanation may be sufficient. For others, however, we may need to look at social and psychological factors. Teasing apart causes in any particular case would be difficult, and that’s more the job of clinicians and case managers, who are “on the ground” and working with the client.

As for me, when I look at data, I am looking at groups of people, and making connections. I may be focusing on social causes at the moment, but that doesn’t mean I don’t think other causes may be involved in particular cases.

Calling Schizophrenia a Brain Disorder doesn’t Give Primacy to the Biomedical Model

In this essay, I want to argue that we should refer to psychotic disorders as brain disorders, but that doing this doesn’t mean giving primacy to the biomedical view versus the biopsychosocial view.

In keeping with some of my previous thoughts, let’s assume you get a broken leg. Furthermore, let’s assume that your broken leg is due to a social ill—someone assaulted you.

You go to the doctor. You get a cast, but, in addition, as you heal, you may need physical therapy in order to heal better in your leg.

Seeing a broken leg as a medical issue doesn’t mean you won’t need treatments other than having a cast, and using crutches until you heal.

In fact, this may be yet one more trauma in your life that you don’t need.

Now imagine that, years down the road, you become psychotic. Imagine further that this is because you have experienced hardship, childhood abuse, and trauma, including being assaulted by someone who broke your leg, years back.

You are taken to the hospital. The psychiatrists there see you as a brain patient. They try to treat your brain by giving you antipsychotics.

But, in addition, you are assigned a treatment team that includes social workers, case managers and counselors.

Seeing psychosis as a brain issue doesn’t mean you won’t need other treatments, like counseling. And, further, your society may need some treatments of its own, if it produces people who traumatize and torments people, and produces social injustice.

Calling psychosis a brain illness doesn’t negate other biopsychosocial causes or cures, just as thinking of a broken leg as a medical issue doesn’t negate the fact that you have been assaulted, and may need counseling, or physical therapy. In other words, calling schizophrenia a brain disorder doesn’t commit us to the biomedical model over the biopsychosocial model.

Broken Bones and Psychosis: Psychosocial Causes and Testability

Imagine that you get assaulted. You are kicked in the leg and it is broken. You go to the hospital. Your leg is x-rayed, and casted. You are given crutches, and asked if you want to press charges.

That’s the way it normally goes, I assume, when you are assaulted and get a broken leg.

No one says you aren’t really hurt, even though your broken leg was caused by a social ill—a bad person assaulting you.

Now imagine you have a psychotic break. Your symptoms cause your family to call the police so you can be taken to a hospital. At the hospital, your blood is taken, you are given a CAT scan, and are, after a while, diagnosed with schizophrenia.

The tests in involved—taking blood, and CAT scan—don’t reveal anything. They are done in order to rule out other things. You are given an antipsychotic, and released from the hospital after seven days, when the doctors see that your medication seems to be working.

At home, you peruse the literature, and find that some people think your illness is not real the way a broken leg is real—because your illness, they think, has psychosocial causes. Perhaps you experienced a lot of adversity, or trauma as a child. These are things correlated with experiencing psychosis.

Not everyone who gets kicked in the leg will get a broken leg. That depends on a lot of things—where you were kicked, how hard you were kicked, if you were kicked repeatedly, and if your bones were prone to breaking.

Not everyone who experiences adversity or trauma will experience psychosis, either.

Both of these things can be caused by social illness, and social ills in combination with your makeup. If you have especially brittle bones, and some bad guy kicks you, you are probably more likely to get a broken leg. Likewise, if you “are prone to” (we don’t know what that means, but let’s not assume it means you are less “hardy”) psychosis and experience trauma, you are more likely to develop schizophrenia.

But no one says you aren’t *really* hurt when you get a broken leg this way.

Unfortunately, they do say this when you become psychotic.

There is no test, they say, for schizophrenia.

True, the biomedical markers for schizophrenia are not testable in most hospitals. They can’t, for every patient, check for chemical imbalances. Instead, they rule things out, try a medication, and see if that medication (in my case, regulating dopamine) works to restore health.

Not long ago, before the x-ray, they couldn’t *see* a broken bone, either. They had to do similar things in order to diagnose and treat a broken bone. The patient would, I assume, report symptoms and people could observe symptoms. That doesn’t mean broken legs weren’t real problems before the x-ray, just like it doesn’t mean psychosis isn’t real just because not everyone has access to MRIs.

Just because something may have a psychosocial cause, or can’t currently be directly apprehended in the hospital doesn’t make it less real.

Psychosocial Causes, and ‘The Real’

The tendency has always been strong to believe that whatever has a name must be an entity or being, having an independent existence of its own. And if no entity answering to the name could be found, men did not for that reason suppose that none existed, but imagined that it was something peculiarly abstruse and mysterious. –JS Mill

I just read a psychosocial report on psychosis. While I agree with looking at psychosocial causes of psychosis, the report states that psychosis is not real the way a broken bone is real. That there are no medical tests, like an x-ray, that can help us diagnose psychosis.

I think, when thinking about the ‘mental’ or ‘psychological’, people get mystified by it. That’s one reason why I decided to refer to schizophrenia as a brain disorder. The fact is, in many people who experience psychosis, there *are* biological differences. There is, according to many studies, excessive pruning of neurons in the brain. There is, moreover, often chemical differences, which is why regulating dopamine in my brain is helpful to me.

However, that doesn’t mean psychosocial causes aren’t important. I’m a believer that they can be causes just like, if someone kicks you in the leg, you may get a broken leg. Not everyone who gets kicked in the leg will experience a broken leg, but some will. There are a lot of factors at play, such as how hard they kicked you, if you were kicked more than once, and how vulnerable your leg is to being broken. And when we look at data, we will find that people who got kicked in the leg will show up more to the hospital with a broken leg, just like we find that people who, eg, experience childhood trauma will more often later show up with psychosis.

So we think of a broken leg as a medical problem with the leg, and I (at least) think of psychosis as a disorder of the brain. This, even though abuse may be the cause of both of them.

Justice at Both Ends: Preventing and Treating Psychotic Disorders through Social Justice

Introduction

It seems like a cruel joke. People who are already in disadvantaged positions are, on top of that, vulnerable to brain disorders. Then, the society that produced the disadvantage (poverty, racism, sexism, etc.) stigmatizes the person for having an illness.

I want to be transparent here. I am diagnosed with schizophrenia. I live openly with my illness. I am also trained as a philosopher. I had my first psychotic break in graduate school, where I was studying ethics and political philosophy. My doctors told me to apply for disability, but I wanted to work. After a series of various jobs and hospitalizations, I finally applied for—and was granted—SSI. The day I was granted SSI, I cried. It had been an extremely rough ride.

One of the jobs I applied for, and kept until I was hospitalized, was as a case manager. As a case manager, I was trained to treat people in a holistic way. I was to look at each client from a variety of perspectives. But, also, I was trained to advocate for justice for my clients. That’s what I want to focus on here.

Theory and Practice

I want to set aside the theories of justice we learn about in school for a minute, however important and interesting they are. Although my academic training is mostly in philosophy, I have also done an assortment of different work. I have had time to think about—and live out—the issues I am discussing. So I’m not going to apply any certain theory of justice to the problems I am discussing. Besides, Bernard Williams would think applying a theory to a problem the way that is often done would be really uninteresting. And, of course, I want to be interesting.

I am also not going to get into a debate about psychiatry versus psychology. Brain versus mind. I think training as a case manager was good experience for me in diffusing that dichotomy. I am trained to deal with both medicine and psychotherapy, as a case manager. And I am trained to think about the soul and the brain, as a philosopher.

However, I am going to refer to schizophrenia as a brain disorder in this paper. Because that’s what it is, whatever, ultimately, causes it. There is something going on differently in my brain when I am psychotic. I’ll set aside issues of dualism, materialism, and so forth, and let other philosophers better trained in that area deal with those issues.

I am also going to set aside cultural differences. Although there has been interesting anthropological work on the differences in the expression of psychosis, there is also consensus that psychosis occurs in every culture. What I will focus on, however, is treating psychotic disorders in the United States. That’s where I live and am best trained.

“What happened to you?”: Social Causes of Schizophrenia

We know that social factors can be a cause in brain disorders. For example, Holocaust survivors are at an increased risk of developing schizophrenia. There is, we may say, only so much a mind can take.

This does not discount other factors involved in developing brain disorders. However, I want to discuss various abuses and forms of disadvantage at play in developing psychotic disorders.

Prior to taking up research specifically on psychotic disorders, I did a great amount of research in Native Studies. Native Studies is an interdisciplinary field, and I had to learn and read in many different fields—anthropology, psychology, sociology, history, law, criminal justice, philosophy, to name a few. In the social and psychological work I read, it was clear that the effects of colonialism had an impact on the minds of indigenous people. They are at an increased risk for many illnesses, including brain illnesses.

This informed my early notions of brain illness: that it’s mostly social. So, when I became ill, I didn’t know what caused it. (It could be, however, that I have, in fact, experienced a lot of hardship, and was prone to developing a psychotic disorder.)

I eschewed psychotropic medications, and psychiatry in general. I was held, for periods of time, in hospitals and told to be “compliant” (to take medications). I sought out therapy, however, and had a few wonderful counselors. Counselors, I knew, treated things differently. They are not medical doctors shoving, as it were, pills that caused me horrible side effects down my throat.

Eventually, however, I was given an antipsychotic that both managed my symptoms and didn’t cause side effects. I am now a firm believer in taking the appropriate medication at the appropriate dosage, along with therapy, case management, and so forth.

One of my good friends, who, for reasons to protect them, will remain anonymous and vague, works for the military. This is not a delusion. They really do work for the military, and they are not the kind of person you would imagine an ethicist would associate with. The fact is, it’s their job to kill people efficiently and effectively. They are not a soldier. They make the plans that others carry out.

Let’s just say that this person knows how to inflict all kinds of torment on people. (This does not carry out into civilian life.) This person once asked me the most important question anyone ever asked me about my illness: “What happened to you?”

They wanted to know what kind of torment, abuse or disadvantage I experienced that made me have schizophrenia.

I wanted to tell them that I was a teen parent, who had to fight for her education, and was treated very badly by, especially, conservatives as a teen parent. I was told I was going to Hell, and funding for my high school, which was my joy and hope in the world, was always threatened.

I wanted to tell them that I had experienced sexism in the field of philosophy that made me very uncomfortable.

I wanted to tell them that I experienced a lot of sexual harassment when I was working as a teaching assistant.

I wanted to tell them that academia is not made for parents, especially teen parents.

I told my counselor instead.

Stigma

There are at least three kinds of stigma: (1) Self-Stigma, (2) Other Stigma, and (3) Stigma by Association. The literature discusses each of these.

Self-stigma is when a person internalizes the stereotypes and “othering” the society holds about them. They may think they are, in fact, a bad person for having schizophrenia. They may think they are at risk for committing violence. They may think they should be punished, or closely watched. This can cause a person to have low self-esteem, live “in the closet,” and not seek treatment.

Other stigma is when people who do not experience psychosis have negative views and discriminate against people with psychotic disorders. This can include not wanting to date a person with schizophrenia, not wanting to have conversations or be friends with people with schizophrenia, and not wanting to work with people with schizophrenia.

Stigma by association is when people who are associated with a person with a psychotic illness feel shame about having that person in their family, school or workplace. They may lack education about people with brain disorders, and there is evidence that proper education about these issues can lessen stigma by association.

Stigma can lead to discrimination by making people treat one differently. As someone who has dealt with gross amounts of stigma, I can say that people have treated me as a potential threat, a wild-eyed disarray, and needing to be “compliant” and tamed. This, even when my symptoms, which have never been threatening, were at bay. Stigma leads one to “see” you differently. It leads to bias in how your actions are interpreted.

I have learned to deal with stigma by living openly and “calling it out.” I risk all kinds of things doing this, but it’s the only thing I know to do.

Justice at Both Ends

We may live in a world where luck is involved, but there’s luck and there’s luck. We have the ability to change our world, to make things better for other people and ourselves. We have the ability to reduce the amount of negative luck people experience. For example, if we alleviated poverty, there would be fewer brain disorders, just as if we reduce child abuse, there would be fewer cases of child PTSD. If we want to reduce the amount of brain illness in the world, we need to be committed to justice.

At the same time, there are people who do and will continue to suffer. For those people, we need justice at the tail end—we need justice for people with brain disorders. This means making people feel OK with accepting government benefits, increasing government benefits so that people with brain disorders are not living in poverty, and, of course, reducing stigma.

I hope I have made a case for justice before and after psychosis.

Job Hunting with Schizophrenia

There’s an article in the Atlantic about job hunting while having schizophrenia. According to the article, 85% of people with schizophrenia are unemployed, while 70% of them would like to work. This gets back to my previous post about how I am an asset. I explained that discrimination still occurs. Check out the article.

Why I Am an Asset, Even Though I Have Schizophrenia

Although it’s illegal to discriminate against people with mental illness during hiring, it is well known that discrimination still occurs. People with disabilities are disproportionately living in poverty (partly because SSDI and SSI, if they are on that, provide you with just that—poverty) and cannot find work.

Previously, I hid my mental illness from people, especially people I worked with. These days, I live openly.

Let me tell you a few reasons why I am an asset due to my mental illness. Maybe this will change the way people view people with mental illness during the hiring process.

Firstly, having a mental illness, and wanting to be well, makes me, de facto, responsible. I have to go to the doctor once a month for a shot of Abilify. I cannot miss this appointment. It is important that I get my shot on time. The consequences of me not doing this are that I may suffer a psychotic break—considered one of the most disabling forms of disability. So, I am used to both being responsible, and having a huge risk involved in this responsibility.

Secondly, I have been hospitalized eight times. Eight times. How, you may wonder, does that make me an asset? I’ll tell you: Mental illness strikes every income bracket, education level, race, ethnicity, gender, sex, religion, sexuality. Each time I have been in the hospital, I have made it a point to associate with the other patients. I have met people with PhDs from Harvard, teachers, train engineers, gangsters, Christians, atheists. I have bonded with people of every different color and creed.

Thirdly, I have to associate with many types of professionals. My condition has put me dead center in the middle of medicine. I have to have fruitful relationships with (1) my Nurse Practitioner, (2) my General Practitioner, (3) my therapist, and other medical professionals, including nurses and psychiatrists. If these relationships are not fruitful, I don’t get better and they can’t do their job well.

Fourthly, I have had to navigate government bureaucracy. I have been on SSI for a couple of years now. Getting on disability requires that you, even though you may be very ill, navigate a huge system that may seem impersonal and mechanistic. There’s the paperwork, the doctors’ notes, the phone calls. This continues even after you get on SSI. I am required, for example, to give an accounting every six months about how I have spent my money.

Fiftly, I know what it’s like to struggle and to succeed. I have had to learn how to become “scrappy.” A scrapper. It’s not below me to do entry-level work, even though I have a great education and experience beyond entry-level duties. Mental illness knocks you on your butt, quite often, and people like me have had to re-learn how to perform basic acts, like self-care (hygiene, eating, brushing teeth). It is very humbling to be on top of things and then, suddenly, have to remember that you need to wear shoes when you go outside. My success has not been handed to me on a platter. I have earned it.

Sixthly, I know how to manage stress. In fact, I went to counseling for six months one time just focusing on how to manage stress. This is because stress, for me, can cause flare ups in my schizophrenia. I’m not the only one prone to stress-related illness, though. There’s a whole body of research on how every day stress affects most people. Most people. Not just me. However, I have had expert education and training in managing stress.

Seventhly, I am creative. It’s not just me who is creative. Anyone who has had to deal with a serious, chronic illness has had to get creative sometimes. I have had to try different treatments, different doctors, different therapists. And I have had to be open to different and new treatments, therapies, solutions. Sometimes, I have proposed my own solutions to these challenges. I have discussed treatments with scholars who work in the area of psychiatry.

Eightly, I have a unique perspective. This is because, when you are ill, you come to a point where you are free to think differently than most people who are going about their daily lives. Not often do we have time to pause and reflect on the important things in life. But I have. Not just as a philosopher, but as an ill philosopher. Illness forces you to pause and take stock of things. As an ill philosopher, I have been forced, on top of my choice, to take a perspective of reflection and mulling over what’s important in life. This has given way to creative and unique thinking.

These are but a few reasons why I may be an asset to an organization. I’m sure that other people with mental illness have similar ways in which they are assets. Think about that next time you are hiring.

About Schizophrenia

I write a lot about having schizophrenia, but I don’t often write about what it is and how it differs from other mental illnesses. Here’s a short article over at PsychCentral that discusses the difference between schizophrenia and bipolar disorder.

About schizophrenia:

Schizophrenia is less common than bipolar disorder and is usually first diagnosed in a person’s late teens or early to late 20’s. More men than women receive a diagnosis of schizophrenia, which is characterized by having both hallucinations and delusions. Hallucinations are seeing or hearing things that aren’t there. Delusions are the belief in something that isn’t true. People who have delusions will continue with their delusions even when shown evidence that contradicts the delusion. That’s because, like hallucinations, delusions are “irrational” — the opposite of logic and reason. Since reason doesn’t apply to someone who has a schizophrenic delusion, arguing with it logically gets a person nowhere.

Schizophrenia is also challenging to treat mainly because people with this disorder don’t function as well in society and have difficulty maintaining the treatment regimen. Such treatment usually involves medications and psychotherapy, but can also involve a day program for people who have more severe or treatment-resistant forms of the disorder.

Because of the nature of the symptoms of schizophrenia, people with this disorder often find it difficult to interact with others, and conduct normal life activities, such as holding down a job. Many people with schizophrenia go off of treatment (sometimes, for instance, because a hallucination may tell them to do so), and end up homeless.

When Having a Disability Means You Can’t Work

Right now, my doctor doesn’t want me working. I’m simply not ready, and I have to come to terms with the fact that I may never be ready.

I have a very good friend who has bipolar disorder. He is also on disability, and we recently discussed working. He was feeling like he should work, but was unsure about whether he could handle it.

He’s been stable for a few years, and here’s the conclusion we came to: He remains stable by (1) taking meds, (2) going to counseling, and (3) maintaining a therapeutic lifestyle 24/7.

We concluded that, without any one of these, he would probably go back to the hospital.

It’s the same for me.

I continually do things that are therapeutic—whether it’s participating in poetry, painting, writing, reading, photography, walking, and so forth. I maintain a therapeutic environment for myself 24/7, under the advisement of my doctor.

It’s only been a year since I have been in the hospital, and just under a year that I’ve been on my current medication. That’s far too early to tell whether my medications will prevent me from having a psychotic break if I should try working. I have, in the past, had a psychotic break every six months to a year. I still vividly remember my last break, and I don’t want it to happen again.

Keep in mind that I was given a poor prognosis. The very first psychiatrist I saw told me I should expect to lose a lot of cognitive functioning. I’m lucky to have not lost as much as they thought. I chalk it up to having good care, and fighting like hell.

But I still struggle with not working. The feeling of not working for a living.

If you browse around my website, you will see that, from an early age, I have been involved in many things, and have been very career oriented. For a person like me, not working is devastating.

This is true even though I have doctors’ orders.

I know I have a legitimate disability. There’s no doubt about it. I have had serious psychotic breaks. I am trying, each day, to maintain my health, above all else. I don’t like becoming psychotic, and it’s not like my medicine is so magical that it will, with 100% efficacy, prevent a psychotic break.

They know that, for example, stress can exacerbate psychiatric symptoms. So, I try to limit my stress, and engage in stress-reducing activities, like practicing mindfulness.

Currently, I have to come to terms with the fact that I cannot work—my doctors says so, even—and that I may never be able to work again.

For me, coming to terms with this myself is one thing; a big thing. Realizing this is but one step in coming to terms with my condition and lot in life.

But the even bigger thing is having regular people understand this. When people meet me—when I am out in public—they may not know I have a mental illness. (Unless I am symptomatic. In that case, I may be in my pajamas in public, or looking a huge mess.) I have an “invisible disability.” Not to mention, many people still have stigmas about mental illness, making them think a mental illness is not a real illness just because you can’t really see it.

So making other people understand that I may not be able to work—and that I may be on SSI (and poor)—for the rest of my life is difficult. But it’s something that’s important.

I hope that, if you are reading this, you will not judge people who have to be on disability and who cannot work due to disability. There’s a segment of society that makes people feel like it’s not a legitimate option. This often stems from conservatives who tout the notion that people exploit the safety net system. For so-called Christians (as most of them allege they are), they are highly skeptical and not especially loving when it comes to caring for the wretched of the Earth. (WWJD?)

In my experience, it’s very difficult to get disability. It wouldn’t be easy to fake it. I had to be hospitalized eight times and given a poor prognosis from several doctors before I was given SSI. I was suffering, and denied SSI (and, thus, healthcare) for several years. The whole process is insult to injury. And then you end up living in poverty, anyway.

But my whole point is that each of us can make a difference. We can change things so that people like me, who have to be on disability, do not have to constantly feel like we have to justify this to people who have no business prodding for our medical information.

The fact is, I have tried working several times. Everyone who knows me knows I didn’t want to go on SSI. I wanted to work. Take a look around my website—I like professional accomplishments. But I had to go on SSI because I simply could not work.

Let’s try to make things easier for people who are already suffering enough.

Breaking Stereotypes

What do you think of when you think of a person with schizophrenia?

If you are like most people, you probably don’t think of technology savvy people, using said technology to better themselves.

But according to this new survey, that’s exactly what the picture of schizophrenia is in America, currently. That puts me in line with other people with schizophrenia. I use a lot of technology–computer, smartphone, tablet–and I use all of this to connect with other people, including other people with mental illness, and gain information and other things to help me.

How We Treat Mental Illness

I read an article recently about the current method of treating mental illness, which was referred to as “the shotgun approach.” Basically, when you have a mental illness, they try different medications on you until they find one which works (hopefully). They do this even though the medications used to treat, say, bipolar or schizophrenia work in different ways.

In schizophrenia, at least, the current theory is that there may be different underlying causes for the same symptoms. So, the reason I have schizophrenia may be different than the reason someone else has schizophrenia. The underlying issues with the brain, or past trauma, or environmental factors, may all be different. That’s why Abilify may work for me, but not for someone else. And that’s the reason why other medications I have tried, which react in the brain differently than Abilify, have not worked for me.

So, people with schizophrenia may present with similar symptoms, such as hearing voices, paranoia, and so on, but the reason they have these symptoms may be completely different.

For me, it’s really hard to tell why I have schizophrenia, with the exception of looking at the drug Abilify and seeing how it works in the brain. Of course, there may be environmental factors at play with me that triggered things (it wasn’t easy being a teen mom, for example, and conservatives, who kept telling me how I was going to Hell or cutting funding for my high school, didn’t help), but there may just be something organically different in my brain. (Not structurally, though. I’ve had CAT scans.)

There are genetic and other tests they use for people who do not respond to medications which can give doctors more insight as to why someone has a certain disease, but these are not readily available. In my opinion, they should be. Too often, as in my case, several years are wasted trying different medications to no avail. Often, it takes years to find the right medicine. That’s wasted years for many people—when they could be productive years…if they had the right medication.

That was the point of the article: there must be some way to get people the correct treatment much sooner than what is currently happening. I know, in my case, it would have been helpful to have the right medication much sooner. I may have been able to keep working, or, at least, finish some projects I was working on. At any rate, I would have more sooner been able to enjoy a Spring day like today.

Jennie 4 13 16

Self-Care

Eating better and exercising has really made me feel better. I didn’t know just how bad I felt until I started feeling better. It’s not just getting healthier, though. I have struggled with a little depression over the past, say, year or so. Even people close to me haven’t been able to tell. But I know it’s true.

I go to the doctor again soon and will discuss it then, but I’ve had problems with things like self-care and getting out of bed. Over the past two weeks or so this has gotten so much better. I feel like a new woman.

One of the reasons my doctor and I decided for me to not work is because I have had serious problems with self-care (from schizophrenia) even when I’m not working. When I do work, I end up in the hospital. This has happened eight times—the amount of times I have been hospitalized—and she wants me really good and stable before I even think about working.

I’m doing really well on Abilify, but progress is slow. I’m just now at the point where I’m caring again about taking care of myself. I have been showering each day, brushing my teeth, eating right, exercising, getting out, etc. This is progress, but my doctor and I are taking it very slow.

I’m lucky to have so many great people in my life who understand mental illness. One of them suggested that I make a list of my daily cares and check them off each day so I do them and don’t forget. This has helped me.

It has also helped that I have been fortunate to have so many wonderful people in my life. I recently “came out” to everyone in my life–including people on Facebook, etc–about having schizophrenia. I just couldn’t bare having such a big secret. I was welcomed and accepted by all of them. I cannot say enough how helpful it is to have people in your life who are supportive and do not hold stigmas about mental illness.

Would Changing the Name of Schizophrenia Help End the Stigma?

There’s an article in the Huffington Post about how changing the name of schizophrenia might help end stigma. The proposed term is “psychosis spectrum.” That may be more accurate in terms of what people actually experience. There are varying degrees of schizophrenia. Personally, I never related much to the descriptions that are provided in much of the literature because, for example, it rarely states that schizophrenia can be episodic. I have experienced psychotic breaks that are episodic, so I never related to the image of a person who is constantly in a state of psychosis. So, “psychosis spectrum” may be more accurate.

Update

I mentioned in a previous post that I have schizophrenia. I don’t talk about it too much these days. I am a person first, and having schizophrenia is just one thing about me. But I did want to mention that I am on a drug that seems to be working well for me right now. It took me about five years to find the right medication; one that suits me and does not cause horrible side effects. I have also participated in therapy, which has been really great for me. But when it comes to my ongoing health issues and whatnot, I won’t be posting too much about that. Currently, my doctor doesn’t want me working full time, so I am not. But I try to participate in a variety of things, many of which I have posted on this blog. I know that some of my followers also have mental health issues, and I wish the best for you.