"What it's like to be a high functioning schizophrenic"

here is an article i just read that i thought someone here might want to read, too…

Here are some things you need to know about schizophrenia: If you have it, you’re forced to question everything, whether it’s real or invented by your own mind. You can’t overcome it with willpower alone, like Russell Crowe in A Beautiful Mind. One in every 100 people will develop it, often in their early 20s, meaning there’s a chance you know someone who has it, even if he or she doesn’t seem schizophrenic at all.

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I was diagnosed with schizophrenia nine months ago, after a slew of other diagnoses—depression, generalized anxiety, anorexia, borderline personality disorder, post-traumatic stress disorder, psychotic disorder, body dysmorphic disorder, conversion disorder, obsessive-compulsive disorder, and bipolar disorder—failed to explain the complexity of my symptoms. (Some of those diagnoses still stand, but others have been replaced by the newer schizophrenia diagnosis.) My doctors seem to think I’m doing well—or, as they put it, I am “high functioning.”

It started three years ago, when I woke up to a small rushing inside of my head—like when you hold a shell to your ear and can hear the faint crash of waves. I went into work later that evening, and everything seemed normal. I ran the register, I stocked shelves, I cleaned the bathroom and swept the floor. Then I started to notice that the voices of the customers sounded strange, as if a second voice in the background was trying to catch up. That evening, I had my first auditory hallucination, something that happens to 75 percent of people with schizophrenia.

Later, I had my first visual hallucination—a man who grabbed onto me and whispered sentences that hardly made sense. He followed me home. I found myself convinced that he was there to kill me and could read my mind. More than that, I was entirely convinced this man was real.

On Motherboard: What Schizophrenia Isn’t

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After that, my mind was never quiet again. I stopped sleeping regularly, and when I did sleep, I had terrifying nightmares about alien abduction. I grew paranoid about the people around me and started to disassociate. Gradually, I began to feel more and more like a balloon attached to a distant body. Over the next two years, I attempted suicide twice and was hospitalized six times, where nurses would give me gowns with no strings. At the time, doctors didn’t suspect schizophrenia, which affects about 1 percent of the population.

I later learned that that 1 percent translates to about 2.4 million Americans—and that I was one of them.

Returning to high school after my hospitalizations, I made up stories to answer the inevitable barrage of questions. I lied to everyone, save a few teachers, and tried to pretend everything was fine. As I graduated with honors and a sizable college scholarship, I tried to push past my mental health concerns—but they were unavoidable.

After high school, I was living off of a checklist that I hung on my wall:

  1. Wake up
  2. Self-care (shower, brush teeth, etc.)
  3. Eat
  4. Dress
  5. Take meds
  6. Go to class
  7. Eat
  8. Take meds again
  9. Coping skills (breathing exercises, etc.)
  10. Take meds again

Most days, I couldn’t manage to get through the list. I went off of the antidepressant I had been prescribed, and I turned to drugs to self-medicate. I was barely functional—I stopped brushing my hair and teeth, stopped washing my clothes. By the end of my freshman year of college, I had met every single mobile crisis worker in the area, and the emergency room staff knew me by name.

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Then, last August, at the age of 21, I was finally referred for a new psychological evaluation. It was a four-hour test. When the results came back two weeks later, my caseworker pulled the envelope out. “Your evaluation came back. You’ve been diagnosed with schizophrenia.”

I took the envelope in my hand and pressed it to my lap. “OK.”

“Well, aren’t you going to read it?”

“No,” I said, “I don’t think so.” The results gave a name to something I’d already lived through.

To be a high-functioning schizophrenic is to barely function at all.

Following my diagnosis, I started taking antipsychotic medication. My first large dose left me with an intense but intangible feeling of fatigue. My brain became dense, like spongy bread that had failed to rise, and there was no amount of coffee that could make me feel awake. Soon, I gained 20 pounds—a common side effect of antipsychotic medications—and could no longer fit into my old clothes.

Related: Treating the Elusive, Disabling “Flatness” of Schizophrenia

I take medication three times a day; at night, I need a concoction of melatonin, Benadryl, and Vistaril to fall asleep. Though my medication has saved my life, it will also probably end it. Antipsychotics significantly increase the risk of developing breast cancer and diabetes. Just being diagnosed schizophrenic takes 20 years off my life expectancy, and the suicide rate for schizophrenics is eight times higher than it is for the general population. Every few months, there’s a story in the news about a person with schizophrenia being killed by police.

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Even on medication, I experience auditory hallucinations all the time. Sometimes it’s background chatter; other times it’s white noise. Sometimes I can understand the voices, and sometimes I can’t. Often I find myself terrified that the radio can hear my thoughts. I have to pause and breathe my way through every thought, every action, separating hallucination from experience. It’s never quiet.

This, the doctors tell me, is what a “high-functioning schizophrenic” looks like. I can attend university, as long as I keep my course load to three classes at a time. I can’t work, because it’s still hard for me to control my symptoms, but I don’t need to live in a clinical setting or a group home. I’m succeeding, they tell me, because my life has regained some normalcy. But to be a high-functioning schizophrenic is to barely function at all.

From the outside looking in, I guess I seem fine. People seem surprised when they find out. “Wow,” they say, “I’ve known you for years, and I never would’ve thought that you…”

“I’m schizophrenic,” I say. “You can say it.”

When people do talk to me about my condition, they want to know what the voices sound like. They want to know I have more than one personality, or if each personality has a different hair color. (No, that’s not what schizophrenia is like.) They want to know if I’ve seen A Beautiful Mind.

Schizophrenia is a lifelong, disabling condition, but there are no relays for this disease. There are no walks to end schizophrenia, no T-shirts that say, “I love someone with schizophrenia.” People look at me with fear, not empathy, when I tell them about my diagnosis. And although I have scars—emotional and physical ones—from this disorder, I do my best to hide them. After all, the doctors say I’m functioning just fine.

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This isn’t high functioning. There are people on the forum who have finished university and also work in well paying jobs.

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Hi @Linate i hope you are well,

I like to think i am high functioning to some degree but i know others that function better than me, I am usually quite active and i take a low dose of med with no symptoms, still havent reached my full potential yet though so i keep trying to build on what i have achieved, mentally, physically and spiritually.

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Most of the people on this forum are high functioning to various degrees.
Low functioning schizophrenics would have a difficult time using a computer or getting online.

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Yes, and we are so rare that we are statistical outliers.

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I finished university but not until I was almost 30. I’ve been working since then, but sometimes my symptoms get me into trouble. Or, I embarrass myself by expressing thoughts that could give away my condition. I had to take two months off recently due to a hospitalization and when I came back to work, I felt like everyone knew and that they were all judging me. I have a lot of paranoia that I have to deal with. And sometimes I get sucked in by the voices and get distracted without realizing it and don’t meet deadlines because of that. It can be tough, but I’d rather be working than not. It’s a great distraction most of the time.

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I’m fairly high functioning sza but struggling with avolition so I don’t work and I’m not very independent. Haven’t got much money of my own or a driving licence. Rely on my husband. Struggle to clean house and brush my teeth. Struggle to write my books or paint. Don’t bother dressing unless I go out. Don’t like to go out or socialise. Like to be by myself and read. Look after my husband but lack in some ways (like the things mentioned above).

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I’m considered high functioning. I still struggle with hygiene and other things. But I do have a small part time job and take care of a family the best I can. It’s a struggle, but you just keep putting one foot in front of the other.

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I hate the term high functioning. It is a term neurotypicals give to chronically ill people to separate them into categories based on how inconvenient our disability is to THEM. It has very little to do with how we experience our own illness or how hard we work to pretend to be normal.

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Not sure why my post was flagged? However, if there is one thing I realize back on this forum this time, it’s that psychiatrists have it so difficult that their patients don 't listen to the psychiatrist’s advice most of the time. Hence them not recovering.

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That’s so true that the psych doctors and nurses tell you that you are “doing just great” when you are just really struggling! I’ve experienced this. It doesn’t apply to me now but, it has in the past for sure.

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I function enough to work full time and maintain a marriage but I don’t consider that high functioning. I am barely managing.

I was a high functioning adult before I got sick and I can’t even compare how much worse I am now than what I used to be.

I am not even half the man I used to be.

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Screw it. I just do what I’ve always done.
I live by the Nike motto: “Just do it.” I do what’s in front of me and I usually do everything in life that is necessary.
Woody Allen once said, “80% of success is just showing up.” Well, I’ve showed up a lot of places including jobs, school, my own apartment, the grocery store, my dads house 250 miles away, my family’s weddings, trips to Reno or Las Vegas. too many barbeques and parties to count etc. I used to show up in crack houses, abandoned houses, and dangerous streets at 2:00 am. But I stopped doing that and showed up at a 1000 CA, NA, and AA meetings instead.

And all that was just this past week.

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I consider myself high functioning. I just graduated with my 2nd degree, have had no issue holding jobs, maintaining social relationships, etc.

But every day for me is still a struggle. Off my medication my life is a nightmare…my grades go from being all A’s and B’s to barely scraping by and often failing…even on medication many aspects of life are challenging and overwhelming to me such as getting dressed, showering, brushing my teeth, even simple things like taking my meds or changing a pad can be stressful and a process for me. Nothing in my life is effortless. (Except maybe eating! Ha!)

That is something a lot of mentally healthy people take for granted I think. The ability to just LIVE without every little thing being a battle with yourself to do it. I am so envious of people who can just wake up, shower, brush their teeth and start their day without even giving it a second thought.

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Well, I’m obviously high-functioning. Not only do a lot of SZs tell me that I’ve been misdiagnosed and don’t have the illness because I’m professionally successful, but I’m high-functioning enough that I eat neurotypical co-workers alive, performance wise. Of course, I still need meds because my positive symptoms will come roaring back if I go off them. Eventually lose my insight and wind up in the hospital with a relapse.

Good to see I’m continuing my half century long tradition of not managing to fit in anywhere.

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I hear you. I managed for years to support my family, a big one, and I wasn’t even on any meds except the occasional antidepressant. My symptoms got worse, though, and now I’m half of what I was, though still able to function.

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■■■■ schizophrenia. I hope the Tyranids come to wipe us out.

I have been diagnosed as high functioning because, I lack the flatness effect, mostly. I think people sometimes confuse “high functioning” with the degree of absence of positive symptoms, almost always a result of an efficient response to anti psychotic medication. In my case, although a stranger would never think I lived with schizophrenia a review of my achievements after going acute versus before going acute would make it clear that I am not high functioning at all but merely without flatness effect. Or maybe it’s my negative symptoms which have been a big handicap all the way through this. So in summary if if I have a point to make I think the term “high functioning” less defines a person living with schizophrenia than it describes, typically partially, a person living with schizophrenia.

I find this as well. My suspicion is that we’re some of the lucky ones who respond well enough to medication and have not suffered too much brain damage during psychosis.

After having a few people do this to me, I have been asking to be re-diagnosed and it irritates everyone in my care team who keeps telling me I have Schizophrenia, and no amount of asking will ever change that.

I used to quit my meds cold turkey a lot, but I have stopped doing that over the last two years. So not been to hospital in that long.

Now the psychosis has been kept under control, we’re now dealing with underlying anxiety, Akasthia and now Autism.

It has been a rollercoaster. I have no idea how I managed to get through all this ■■■■.

I guess it’s a journey we’re in together, and everyone is always at different stages at different times throughout a Sz life

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I consider myself to be a high functioning sza. I do my own shopping, cooking, cleaning, hygiene, finances, make all my own personal, financial and business decisions.

I don’t work, drive, or own a car because I can’t. I do volunteer.

All of my positive symptoms are controlled with meds. I have minimal cognitive symptoms, mostly memory issues. I suffer from negative symptoms mostly amotivation, apathy, and withdrawal.

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