Jane Alexandra

@missj54 | contributor
Jane is an occasional writer, part-time psychology student and teacher who likes to sing, paint and hug her dogs. She was formally diagnosed with schizophrenia three years ago, but dislikes labels almost as much as she dislikes running as a form of exercise. Jane recently started sharing her writing with others in hope that her experiences inform others about some of the realities of dealing and living with a mental illness. She enjoys writing as a way to communicate and escape, but struggles with writing about herself in third person. You can find more of her thoughts at https://theworldismyapple.wordpress.com/
Community Voices

the halfway mark


Any relationship - friendship, romance, occasional coffee bud or passing acquaintance - has it’s sticking points. The moments when you have to go that extra mile, or take a step back and regroup. Moments that you love, or hate, or are frustrated by or merely indifferent to. Moments when you can’t do as you wish, or as you planned.

That’s life for a lot of people, especially right now.

Relationships are all about give and take, however you define them. So. However we are connected, there are things you need to know.

I have a mental illness. It’s not always visible, and I try very hard to keep it that way. It doesn’t always affect how I participate in our shared whatever.

I try very hard to keep it that way, too.

But sometimes, it does.

Some days, you’re going to have to meet me 75% of the way, because I can only manage 25%.

Some days, everything is loud, and jarring, and the world is not friendly. Those days, you’re going to have to go 95%. It is taking almost all I have to stay upright.

And some days, you might have to carry me, because I cannot move forward even half a percent on my own, despite how much I desperately want to. If you stand around waiting for me to do it myself, neither of us will go anywhere, because I just cannot right now.

I will rage against this, because I hate it more than I have words for.

Hold my hand. Tell me it will be okay. That it’s okay to cry, and that you’re here.

I need to know it’s just me that’s fallen apart, and not the whole entire universe. That it is temporary, even if for me it feels like the minutes stretch into hours, and every second I don’t cry is a small faltering victory to wave from a tower.

Celebrate the small moments, even if they seem incredibly trivial. Today I got dressed. Today I brushed my hair. I left the house.

Remember that everything can be measured in comparison. A deer looks large in a field next to a badger, but small when you let the rhinoceros in. It’s all relative.

Today I watched a full 25 minutes of a TV episode... without falling asleep, or becoming irretrievably distracted. Yesterday, I managed ten minutes.

It won’t always be like this. Your 95% will be rewarded, because I know what it’s like to feel controlled by things outside of my own iron will.

I’d like to be able to tell you, tomorrow, that I made it until the end credits. That I met you halfway, or did for you what I’m feeling guilty you’re always ALWAYS doing for me, and standing firm between you and the things that slow your step.

Stick around. I’m working on it.

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Jane Alexandra

When Mental Illness Means Searching for Acceptance for Myself

6:56 His alarm rings its shrieks into the wintery morning air. I wake to the sound of a demon orchestra, snarling and sharpening their clicking claws in concert pitch, reminding me of being small and hearing monsters in the closet. It has taken years to understand that for some people the ability to see invisible monsters comes with its own special DSM-V diagnosis. When you’re 4, you get your parents to fend off the monster. Beat and burn and banish. Thirty-one years later, I have to do it myself. It is easier to pretend to sleep than to admit to him that I need him to take up his pitchfork and evict them from the bedroom. Trespassers will be prosecuted, unless they’re invisible, because he doesn’t know how to fight what he can’t see and I do not have the strength to give directions. Or watch him stare at me. I wish they were gone. I wish for a hug. I can’t ask for either. So feigning sleep it is, until he leaves, and I can shake and quiver in the empty space he leaves behind. And perhaps dream a different reality. Miles to go. 7:34 My alarm sounds and the space around me is quiet for the snuffling of Stella and Sherlock. Somehow I have slept. The monsters are silent now. But there is something watching me. I hesitate to open my eyes. Count to three, then 10, then 50. One-Mississippi-two-Mississippi. Count backwards, forwards, by threes and sevens and 10s. And so on. I can already tell today is going to be rainy with a chance of spiders. Sure enough, a lone spider waits hungrily in the corner. He waves his furred feet, taunting me to invade his personal space. As seconds pass, he multiplies, like a trip through a funhouse mirror room. Except I can’t escape, even when the way out is paved with good intentions and the clearest of signposts. There is nobody here to call to, and no help forthcoming. I can’t call out to the little one and ask her to watch the spiders lest they move when I rise. She might sense something is wrong the way that children often do. She might report it, and there will be hell to pay. It is easier to make a cave of the quilt and ignore the tap tap tapping of tiny arachnid feet. Sleep is an impossibility now; I need to be on guard in case they leap from the walls to crawl along the back of my neck. My clavicle itches just thinking about it. The itch travels slowly up into my hair. I don’t dare scratch lest I alert them to the fact that I’m hiding here, biding time. But the quilt is warm, and there is a dog on each side of me. Perhaps if enough time passes one of two things will happen: the spiders will melt into the walls, or I will be brave enough to rush past them in my quest for proper clothing and the bathroom. It’s Australian Survivor: Psychosis Edition. Now wouldn’t that get some interesting ratings. 8:07 Late you’re late you slept in useless you’re SO useless Get up ignore spiders find workout gear strap the girls in now organize the child don’t let her see us shhhh No time for meds and normal morning routine lunch school bag scatter food for dogs Four shoes on four feet you’re useless you’re an idiot you are letting people down how dare you go out looking that disheveled what an embarrassment Ignore the screaming do not scream back it’s 8:19 Go go go 8:40 Have to drop V at OSHC. Almost succeed in making a quick getaway. No time to say hello goodbye I’m late I’m late I’m late! Except. The OSHC director wants to talk to me. She talks in a normal voice, but her face is painted with a disgusted sneer. It twists across her normally friendly features from chin to nose like I am dogshit on her shoe. Her eyes shoot daggers in my general direction. What did I do? I’m overdue; I’m really in a stew But she is talking about accounts and payments and nothing in her voice matches what I see on her face. So maybe what I see is not real. Or maybe it is but either way I am late ( so late; for a very important date) so I can’t investigate. “So sorry,” why is she mad at you useless what did you do wrong you’re so stupid, “I have to go…” No time to say goodbye — hello! — I’m late I’m late I’m late 8:49 There is coffee. And I’m pretty sure the coffee girl didn’t poison it. Or actually tell me to go fuck myself when she took my order. But not 100 percent sure. Stupid brain. I’ll drink it anyway. I might wake up then. you don’t need the calories so gross People are talking. Sometimes to me but mostly to each other and I’m fine with that; the morning is fraying around the edges. It’s not even 9 a.m. The coffee is hot. My friend Jane is here. I am safe with her even though the cafe is filled with strangers. She knows about Boris and she isn’t embarrassed to be seen with me when he’s around. Unlike some others. No point trying to figure out which people are real. There are no spiders right now. I’ll celebrate the little wins. I don’t think the OSHC director was really mad at me. I think it was my stupid brain doing its usual mental photoshop trick. Wish I could remove that malware from my mental hard drive. Fuck. Boxing in 20 minutes; will there be spiders on the bag like the other day? Jane is here. There is coffee and the coffee is a good enough breakfast. I don’t need a donut. No you don’t you are disgusting already Shut up, brain. Say a goodbye to third person whose name I can’t remember. Let’s go. It’s time to punch something. 9:33 Spiders spiders everywhere. Big black one on the chain. Squat elbow jab hook. Little red ones crawling inside my gloves. Can’t shake them out. Will look stupid. stupid is as stupid does you idiot There are two big black spiders now and they are inching down as I punch and pant. Jab cross double body shot hook Twenty black spiders sitting in a tree K-I-S-S-I-N- stop it just stop Is it possible to be energized and scared at the same time? If I punch harder I might scare them off. Go bother someone else. My friend Jane is here so it’s OK; I am OK. If they bite she will help me I can ask her to help. 10 seconds fast 20 seconds hard Kick the bag until I see stars. Stars trump spiders and getting fit trumps that and god it’s a full house of fucking crazy in my brain today. Bicycles mountain climbers plank You are done No more spiders now. I punched them away. but you still got me baby 11:04 Doctor visit. There’s a man in her waiting room who stares with cut-glass eyes at the fog that surrounds me. Maybe he sees them. Maybe he’s not even there. Called in. Doctor is wearing red. She is not safe today. Don’t tell her anything we will hurt you No, everything is fine. Just need a referral thanks. Yes, my medication has increased a lot. But I’m managing fine. Thanks for your time. help oh please can you see them See you next time. 11:29 I give in to the weight of whispers on my shoulders. I give in to the flicker and flare of not-actual-people. Somehow I sleep. 12:51 Showered. Warpaint applied. Two matching shoes. Even brushed my hair. Doorbell. I almost look normal, but even if I didn’t, Jane wouldn’t care. She sees Boris without knowing what he looks like. She sees him in my gaze, in the slump of my shoulders and the twist of my hands. She knows, and that makes her safe. Boris is wary in her presence because she takes no prisoners and he cannot hurt her. We — the three of us — know this. I am safe today. And tomorrow D will be at home. So I am safe tomorrow as well. Safe is good. We eat. It is not poisoned. I am 100 percent sure. but think of all the creeping calories – I. Don’t. Care. Shut up. .….and miracle of miracles, he does. 2:05 People. People everywhere. They may or may not be real. But she is, and she would tell me if I was being “crazy.” We shop, the two J’s together on a mission. I buy things. We chat, and it’s real, and it’s great. I feel normal. Like it will all be OK as long as I’m spending money and participating in the world. I try something on. look at you all that flab you disgust me so ugly “Not quite what I was after, but thanks!” It’s important to keep up the appearance of sanity. Even if I momentarily want to hide. But isn’t this what normal people do? Only normal people don’t see spiders on the merchandise when they look in the shop window. It’s still great fun though, and I refuse to give in right now. 2:23 There is coffee. And I’m pretty sure the coffee girl didn’t poison it. Or actually tell us to go fuck myself when she took our order. But not 100 percent sure. Stupid brain. I feel like I’ve run this dialogue in my head already today. Wonder why. There is also a brownie. And we are going halves so it’s OK. I can eat it, and squash Boris and all his insults down. thunder thighs fat chick beached whale It tastes good enough to be worth it. And fuck Boris and fuck the consequences and — “You OK?” I don’t even have to answer. She knows already. I am an open book and she has me almost memorized. “Are you wondering which people are real?” I nod. Want to cry. Want a hug but scared to ask more of her than I already do. She is real. That part I am certain of. “At least there are no spiders. Or unicorns.” We joke about that being a good title for a blog post. If only I could measure my sanity by the absence of unicorns. And I think: I wish I could show you what I see when I look around the shopping center. How their faces warp and change. How they stare, and I stare back, if only to measure their infinite realness by whether they continue to snarl or just look at me for another heartbeat then look away like I’m just a normal person with a lack of social etiquette. What it feels like when the walls start to close in. I don’t need words. Jane knows me too well. We head for the car. 3:14 I am home. It has been a good day, if good is defined by the number of times I didn’t let my crazy come out to play. And celebrating the little wins. Holding a conversation. Being able to laugh, and drink coffee, and concentrate on instructions for longer than your average 3 year old. Being able to believe in more days like this, where I can feel the ground beneath my feet and appreciate good times, better coffee, best friends. What mental illness does is parade unicorns in front of you, again and again, tossed manes in rainbow colors and the staccato stamp of hooves. Eventually you begin to disbelieve in your fundamental disbelief of unicorns. Maybe you even start to enjoy it. And once that happens, once you admit to believing in the unicorns, someone presents you with a horse wearing a cardboard horn, and tells you that all the unicorns you saw were just this: something unnatural, something that is to be laughed at, to be squashed down by drugs and therapies and bloody mindfulness. You almost long to see a unicorn, because at least there is some fragment of beauty in believing in something other than the fact that your brain is out to get you. When there are no unicorns, no spiders, no chatter chatter snarl, you are just like everyone else. With fears and hopes and dreams. And drugs. And weekly check-ins. And an overwhelming, heart-racing, gut-clenching need to lose yourself in something beautiful, even if it’s not what society considers real. OK, maybe not like everyone else. Sometimes I still wish for unicorns, though. Follow this journey on the world is my apple

Jane Alexandra

What I'd Like You to Know About Living With Schizophrenia

I am 35 years old. I have two university degrees in education and am working on a third in psychology. I have a regular, somewhat demanding job that most of the time I like to think I am pretty good at. I like to sing, to paint, to write and to devour books like words are going out of fashion. I am in a steady relationship with a wonderful man, have amazing friends and family, and generally love the life I have created for myself. I also carry a secret. It’s three years old, but not a toddler, though there are occasionally invisible tantrums involved. It requires constant monitoring and management of medication, but I have to see a psychiatrist to do this, not a GP. It sometimes lands me in hospital, but can’t be fixed on an operating table or with IV fluids. I am schizophrenic. As far as I’m aware, when you tell people you have a physical illness or a dodgy back, they tend to accept that those things don’t change who you are as a person, or make you a liability. When you tell people you have a mental illness , the reactions sometimes – not always – range from disbelief (“You seem so normal!”) to mistrust (“Does the TV send you messages?”) to avoidance (“You probably wouldn’t have wanted to come to that party anyway.”). You become an unknown entity, someone to be wary of. A time bomb. When I am well, all the things I told you about myself are true. When I’m not, they are still true, but occasionally they get buried the further I fall into acute illness. Sometimes I can’t work, or follow the plot of a book, and all the colors on my palette start to feel like different shades of black. I have learned over the last three years not only to (mostly) accept it, but to control it, and I am incredibly lucky to have a great support network to help me do this. For those who are caring for, or know someone with schizophrenia or another illness with psychosis, or just want to understand more about what it feels like, here are some things I’d like you to understand about my experience w ith schizophrenia (that I can’t always say out loud)… 1. I can’t just snap out of it, or ignore it. This can be super frustrating to hear. Sometimes, I describe my (occasional) reality as having the TV and the radio on loud at the same time, while trying to read a book and have an intense conversation. It works as a descriptive )and you should try it sometime), but keep in mind that once you’re done trying it, you can remove the distractions with the flick of a switch and go on with your day. For me, it isn’t that easy. 2. There isn’t always a reason for a bad day. Schizophrenia is a chemical imbalance. Yes, symptoms are often triggered by external events like not getting enough sleep, stress or big life changes. But, then there are other days when I wake up and it’s noisy in my head for no reason I can pinpoint. This is frustrating enough, and even more so when you ask me what’s wrong… but what you really mean is why are things going wrong. You mean well, and you want something you can point to as a trigger and offer advice on, but sometimes there just isn’t one. It doesn’t mean my experience is any less real, or less hard. 3. There are two types of symptoms in schizophrenia (and other mental illnesses). They are: positive and negative. And you’re probably thinking “well, positive sounds OK!” Positive symptoms add something to my life, but it’s not like winning the lottery or getting a free coffee. It adds voices, or whistles, or static-like noise. Sometimes I see shapes and shadows that vanish when I look more closely. Occasionally, people’s faces change into something frightening, or I hear a different set of words than what’s coming out of their mouths. Negative symptoms are easier to understand: it’s losing things from your life, like the ability to concentrate, or motivate yourself, or get dressed. For me, the positive usually happens first. It makes me doubt what is real, what I see, what you say. It chips away at all the stuff that makes me me. Imagine traveling somewhere you don’t speak the language. Your senses are in overload trying to absorb all the unfamiliar things. You can’t read the street signs, and when people approach you, you don’t know whether they are offering help or chastising you. Now, imagine you’re in a place you know well, but everything above applies and suddenly nothing is familiar or safe. It. Sucks. 4. If I bail on stuff, it’s not a reflection on you. I am constantly at war between wanting to participate in life and wanting to run away. When things are noisy in my head, everything gets so much harder. I can hide it from you for a while, but it’s like walking in dry sand: the longer you try, the harder it gets to keep moving forward. I’m pretty good at “performing,” and it might seem like everything is OK, but inside, I’m screaming. The louder it is in my head, the more energy it takes to pretend it’s quiet. It’s exhausting, and sometimes I just can’t stay after dinner for coffee, or show up at all. It’s not because you’re bad company, or that you’ve done something wrong. I’m just too tired, and maybe I don’t want to perform (because it feels like lying) but I also can’t risk telling you the truth. Also, see #5 and #6. 5. I don’t mean to seem ungrateful or difficult. It is a struggle to know sometimes how to explain where I’m at, and what to tell you when you ask how you can help. Something that helps one day might not help the next, and I don’t know how to tell you that without confusing the shit out of you or alienating you. It is easier to either deny I’m having a bad day at all, or accept whatever you’re offering without telling you it isn’t what I need today. Because you are somehow still here, offering your friendship and support, and that means so much to me. I know you mean well, and you are trying so hard to help, and I don’t want to make you feel bad. And tomorrow, or the next day, or in a week, I might want that hug, or to talk it through, or to go for a walk. I don’t want to burn any bridges. 6. I do trust you, but I also want to protect you. Sometimes, while we are talking, someone in my head is telling me that if I confide in you, one of us will get hurt, or injured, and it will be my fault. Sometimes they say you are out to get me, or just pretending to care. On a good day, I know you’re not pretending and that you genuinely want to help, but they are very persuasive and I want to protect you. It might seem like I’m dodging your questions or actively pushing you away, and I get that it’s frustrating for you. I feel incredibly guilty a lot of the time about being “too hard to deal with” or being a burden on the people I love. That means I will usually try to spare you from the finer details. When things aren’t great in my head, I hurt and I don’t want you to hurt too. 7. There are no wonder drugs and no quick fixes. Medication is a key part of treatment, but most antipsychotic drugs have side effects and there are a lot of different types and combinations. Some people find one that works for them fairly quickly, while others — myself included — have to chop and change to find the right drugs and doses. I don’t like taking meds, but I have accepted I need them. Regular contact with a therapist is another key factor, but there are heaps of different approaches, and you have to find the right person (or team) for you, then build a therapeutic relationship with them. It’s sort of like dating — you wouldn’t go on multiple dates with someone without feeling some kind of connection developing. Unfortunately, there is no right or left swipe system for finding a suitable (and available) psych, and they barely ever buy you a drink before you take your metaphorical clothes off. 8. The system for getting help is pretty broken, and mental illness generally gets a bad rap. When I first started experiencing symptoms, I was given a number of different diagnoses from depression to bipolar disorder to borderline personality disorder (BPD) . One professional saw me for less than seven minutes, at 5:30 a.m. after a night of no sleep in an ER cubicle on my own (and ankle deep in what I recognize now as acute psychosis ) and promptly told me I was making it all up for attention, then sent me home. In the early days, medical staff told me (or wrote in my notes while I read them upside down) that I had “low resilience,” “low intelligence” and was “non-compliant” and “hysterical.” Doesn’t exactly fill a person with confidence. I also spent some time as an inpatient in a public mental health facility. It was decidedly less than fun. I am incredibly lucky to have found a way out of an overloaded and underfunded public system. The people you hear about on the news, the ones we are taught to fear or ignore: they are not the face of mental illness . They are usually the exceptions to the rule. 9. Schizophrenia is for life, but it doesn’t have to be a life sentence. It’s been three years now since I was diagnosed. It hasn’t always been easy, but it’s not completely crap either. I have learned a lot of things about myself, met some pretty awesome people who have labels of their own, and I have some absolutely amazing people in my corner. The last couple of weeks have been full-on, and at times it’s been a challenge to keep old mate Boris in the background. One of those absolutely amazing people I spoke of earlier pointed out to me today that 18 months ago, I would have probably been admitted to hospital by now. Do not pass go, do not collect $200. Instead, I am still in control, being (mostly) sensible and working through it, even though that means hard conversations and tough decisions. Yesterday, I sat down thinking I wanted to write something about what it feels like to be unwell, and I couldn’t organize my thoughts well enough to explain. Today I can. Whatever tomorrow brings… bring it on. A version of this article was previously published on mentalhealthtalk.info. Follow this journey on the author’s blog.

Jane Alexandra

What I'd Like You to Know About Living With Schizophrenia

I am 35 years old. I have two university degrees in education and am working on a third in psychology. I have a regular, somewhat demanding job that most of the time I like to think I am pretty good at. I like to sing, to paint, to write and to devour books like words are going out of fashion. I am in a steady relationship with a wonderful man, have amazing friends and family, and generally love the life I have created for myself. I also carry a secret. It’s three years old, but not a toddler, though there are occasionally invisible tantrums involved. It requires constant monitoring and management of medication, but I have to see a psychiatrist to do this, not a GP. It sometimes lands me in hospital, but can’t be fixed on an operating table or with IV fluids. I am schizophrenic. As far as I’m aware, when you tell people you have a physical illness or a dodgy back, they tend to accept that those things don’t change who you are as a person, or make you a liability. When you tell people you have a mental illness , the reactions sometimes – not always – range from disbelief (“You seem so normal!”) to mistrust (“Does the TV send you messages?”) to avoidance (“You probably wouldn’t have wanted to come to that party anyway.”). You become an unknown entity, someone to be wary of. A time bomb. When I am well, all the things I told you about myself are true. When I’m not, they are still true, but occasionally they get buried the further I fall into acute illness. Sometimes I can’t work, or follow the plot of a book, and all the colors on my palette start to feel like different shades of black. I have learned over the last three years not only to (mostly) accept it, but to control it, and I am incredibly lucky to have a great support network to help me do this. For those who are caring for, or know someone with schizophrenia or another illness with psychosis, or just want to understand more about what it feels like, here are some things I’d like you to understand about my experience w ith schizophrenia (that I can’t always say out loud)… 1. I can’t just snap out of it, or ignore it. This can be super frustrating to hear. Sometimes, I describe my (occasional) reality as having the TV and the radio on loud at the same time, while trying to read a book and have an intense conversation. It works as a descriptive )and you should try it sometime), but keep in mind that once you’re done trying it, you can remove the distractions with the flick of a switch and go on with your day. For me, it isn’t that easy. 2. There isn’t always a reason for a bad day. Schizophrenia is a chemical imbalance. Yes, symptoms are often triggered by external events like not getting enough sleep, stress or big life changes. But, then there are other days when I wake up and it’s noisy in my head for no reason I can pinpoint. This is frustrating enough, and even more so when you ask me what’s wrong… but what you really mean is why are things going wrong. You mean well, and you want something you can point to as a trigger and offer advice on, but sometimes there just isn’t one. It doesn’t mean my experience is any less real, or less hard. 3. There are two types of symptoms in schizophrenia (and other mental illnesses). They are: positive and negative. And you’re probably thinking “well, positive sounds OK!” Positive symptoms add something to my life, but it’s not like winning the lottery or getting a free coffee. It adds voices, or whistles, or static-like noise. Sometimes I see shapes and shadows that vanish when I look more closely. Occasionally, people’s faces change into something frightening, or I hear a different set of words than what’s coming out of their mouths. Negative symptoms are easier to understand: it’s losing things from your life, like the ability to concentrate, or motivate yourself, or get dressed. For me, the positive usually happens first. It makes me doubt what is real, what I see, what you say. It chips away at all the stuff that makes me me. Imagine traveling somewhere you don’t speak the language. Your senses are in overload trying to absorb all the unfamiliar things. You can’t read the street signs, and when people approach you, you don’t know whether they are offering help or chastising you. Now, imagine you’re in a place you know well, but everything above applies and suddenly nothing is familiar or safe. It. Sucks. 4. If I bail on stuff, it’s not a reflection on you. I am constantly at war between wanting to participate in life and wanting to run away. When things are noisy in my head, everything gets so much harder. I can hide it from you for a while, but it’s like walking in dry sand: the longer you try, the harder it gets to keep moving forward. I’m pretty good at “performing,” and it might seem like everything is OK, but inside, I’m screaming. The louder it is in my head, the more energy it takes to pretend it’s quiet. It’s exhausting, and sometimes I just can’t stay after dinner for coffee, or show up at all. It’s not because you’re bad company, or that you’ve done something wrong. I’m just too tired, and maybe I don’t want to perform (because it feels like lying) but I also can’t risk telling you the truth. Also, see #5 and #6. 5. I don’t mean to seem ungrateful or difficult. It is a struggle to know sometimes how to explain where I’m at, and what to tell you when you ask how you can help. Something that helps one day might not help the next, and I don’t know how to tell you that without confusing the shit out of you or alienating you. It is easier to either deny I’m having a bad day at all, or accept whatever you’re offering without telling you it isn’t what I need today. Because you are somehow still here, offering your friendship and support, and that means so much to me. I know you mean well, and you are trying so hard to help, and I don’t want to make you feel bad. And tomorrow, or the next day, or in a week, I might want that hug, or to talk it through, or to go for a walk. I don’t want to burn any bridges. 6. I do trust you, but I also want to protect you. Sometimes, while we are talking, someone in my head is telling me that if I confide in you, one of us will get hurt, or injured, and it will be my fault. Sometimes they say you are out to get me, or just pretending to care. On a good day, I know you’re not pretending and that you genuinely want to help, but they are very persuasive and I want to protect you. It might seem like I’m dodging your questions or actively pushing you away, and I get that it’s frustrating for you. I feel incredibly guilty a lot of the time about being “too hard to deal with” or being a burden on the people I love. That means I will usually try to spare you from the finer details. When things aren’t great in my head, I hurt and I don’t want you to hurt too. 7. There are no wonder drugs and no quick fixes. Medication is a key part of treatment, but most antipsychotic drugs have side effects and there are a lot of different types and combinations. Some people find one that works for them fairly quickly, while others — myself included — have to chop and change to find the right drugs and doses. I don’t like taking meds, but I have accepted I need them. Regular contact with a therapist is another key factor, but there are heaps of different approaches, and you have to find the right person (or team) for you, then build a therapeutic relationship with them. It’s sort of like dating — you wouldn’t go on multiple dates with someone without feeling some kind of connection developing. Unfortunately, there is no right or left swipe system for finding a suitable (and available) psych, and they barely ever buy you a drink before you take your metaphorical clothes off. 8. The system for getting help is pretty broken, and mental illness generally gets a bad rap. When I first started experiencing symptoms, I was given a number of different diagnoses from depression to bipolar disorder to borderline personality disorder (BPD) . One professional saw me for less than seven minutes, at 5:30 a.m. after a night of no sleep in an ER cubicle on my own (and ankle deep in what I recognize now as acute psychosis ) and promptly told me I was making it all up for attention, then sent me home. In the early days, medical staff told me (or wrote in my notes while I read them upside down) that I had “low resilience,” “low intelligence” and was “non-compliant” and “hysterical.” Doesn’t exactly fill a person with confidence. I also spent some time as an inpatient in a public mental health facility. It was decidedly less than fun. I am incredibly lucky to have found a way out of an overloaded and underfunded public system. The people you hear about on the news, the ones we are taught to fear or ignore: they are not the face of mental illness . They are usually the exceptions to the rule. 9. Schizophrenia is for life, but it doesn’t have to be a life sentence. It’s been three years now since I was diagnosed. It hasn’t always been easy, but it’s not completely crap either. I have learned a lot of things about myself, met some pretty awesome people who have labels of their own, and I have some absolutely amazing people in my corner. The last couple of weeks have been full-on, and at times it’s been a challenge to keep old mate Boris in the background. One of those absolutely amazing people I spoke of earlier pointed out to me today that 18 months ago, I would have probably been admitted to hospital by now. Do not pass go, do not collect $200. Instead, I am still in control, being (mostly) sensible and working through it, even though that means hard conversations and tough decisions. Yesterday, I sat down thinking I wanted to write something about what it feels like to be unwell, and I couldn’t organize my thoughts well enough to explain. Today I can. Whatever tomorrow brings… bring it on. A version of this article was previously published on mentalhealthtalk.info. Follow this journey on the author’s blog.

Jane Alexandra

What I'd Like You to Know About Living With Schizophrenia

I am 35 years old. I have two university degrees in education and am working on a third in psychology. I have a regular, somewhat demanding job that most of the time I like to think I am pretty good at. I like to sing, to paint, to write and to devour books like words are going out of fashion. I am in a steady relationship with a wonderful man, have amazing friends and family, and generally love the life I have created for myself. I also carry a secret. It’s three years old, but not a toddler, though there are occasionally invisible tantrums involved. It requires constant monitoring and management of medication, but I have to see a psychiatrist to do this, not a GP. It sometimes lands me in hospital, but can’t be fixed on an operating table or with IV fluids. I am schizophrenic. As far as I’m aware, when you tell people you have a physical illness or a dodgy back, they tend to accept that those things don’t change who you are as a person, or make you a liability. When you tell people you have a mental illness , the reactions sometimes – not always – range from disbelief (“You seem so normal!”) to mistrust (“Does the TV send you messages?”) to avoidance (“You probably wouldn’t have wanted to come to that party anyway.”). You become an unknown entity, someone to be wary of. A time bomb. When I am well, all the things I told you about myself are true. When I’m not, they are still true, but occasionally they get buried the further I fall into acute illness. Sometimes I can’t work, or follow the plot of a book, and all the colors on my palette start to feel like different shades of black. I have learned over the last three years not only to (mostly) accept it, but to control it, and I am incredibly lucky to have a great support network to help me do this. For those who are caring for, or know someone with schizophrenia or another illness with psychosis, or just want to understand more about what it feels like, here are some things I’d like you to understand about my experience w ith schizophrenia (that I can’t always say out loud)… 1. I can’t just snap out of it, or ignore it. This can be super frustrating to hear. Sometimes, I describe my (occasional) reality as having the TV and the radio on loud at the same time, while trying to read a book and have an intense conversation. It works as a descriptive )and you should try it sometime), but keep in mind that once you’re done trying it, you can remove the distractions with the flick of a switch and go on with your day. For me, it isn’t that easy. 2. There isn’t always a reason for a bad day. Schizophrenia is a chemical imbalance. Yes, symptoms are often triggered by external events like not getting enough sleep, stress or big life changes. But, then there are other days when I wake up and it’s noisy in my head for no reason I can pinpoint. This is frustrating enough, and even more so when you ask me what’s wrong… but what you really mean is why are things going wrong. You mean well, and you want something you can point to as a trigger and offer advice on, but sometimes there just isn’t one. It doesn’t mean my experience is any less real, or less hard. 3. There are two types of symptoms in schizophrenia (and other mental illnesses). They are: positive and negative. And you’re probably thinking “well, positive sounds OK!” Positive symptoms add something to my life, but it’s not like winning the lottery or getting a free coffee. It adds voices, or whistles, or static-like noise. Sometimes I see shapes and shadows that vanish when I look more closely. Occasionally, people’s faces change into something frightening, or I hear a different set of words than what’s coming out of their mouths. Negative symptoms are easier to understand: it’s losing things from your life, like the ability to concentrate, or motivate yourself, or get dressed. For me, the positive usually happens first. It makes me doubt what is real, what I see, what you say. It chips away at all the stuff that makes me me. Imagine traveling somewhere you don’t speak the language. Your senses are in overload trying to absorb all the unfamiliar things. You can’t read the street signs, and when people approach you, you don’t know whether they are offering help or chastising you. Now, imagine you’re in a place you know well, but everything above applies and suddenly nothing is familiar or safe. It. Sucks. 4. If I bail on stuff, it’s not a reflection on you. I am constantly at war between wanting to participate in life and wanting to run away. When things are noisy in my head, everything gets so much harder. I can hide it from you for a while, but it’s like walking in dry sand: the longer you try, the harder it gets to keep moving forward. I’m pretty good at “performing,” and it might seem like everything is OK, but inside, I’m screaming. The louder it is in my head, the more energy it takes to pretend it’s quiet. It’s exhausting, and sometimes I just can’t stay after dinner for coffee, or show up at all. It’s not because you’re bad company, or that you’ve done something wrong. I’m just too tired, and maybe I don’t want to perform (because it feels like lying) but I also can’t risk telling you the truth. Also, see #5 and #6. 5. I don’t mean to seem ungrateful or difficult. It is a struggle to know sometimes how to explain where I’m at, and what to tell you when you ask how you can help. Something that helps one day might not help the next, and I don’t know how to tell you that without confusing the shit out of you or alienating you. It is easier to either deny I’m having a bad day at all, or accept whatever you’re offering without telling you it isn’t what I need today. Because you are somehow still here, offering your friendship and support, and that means so much to me. I know you mean well, and you are trying so hard to help, and I don’t want to make you feel bad. And tomorrow, or the next day, or in a week, I might want that hug, or to talk it through, or to go for a walk. I don’t want to burn any bridges. 6. I do trust you, but I also want to protect you. Sometimes, while we are talking, someone in my head is telling me that if I confide in you, one of us will get hurt, or injured, and it will be my fault. Sometimes they say you are out to get me, or just pretending to care. On a good day, I know you’re not pretending and that you genuinely want to help, but they are very persuasive and I want to protect you. It might seem like I’m dodging your questions or actively pushing you away, and I get that it’s frustrating for you. I feel incredibly guilty a lot of the time about being “too hard to deal with” or being a burden on the people I love. That means I will usually try to spare you from the finer details. When things aren’t great in my head, I hurt and I don’t want you to hurt too. 7. There are no wonder drugs and no quick fixes. Medication is a key part of treatment, but most antipsychotic drugs have side effects and there are a lot of different types and combinations. Some people find one that works for them fairly quickly, while others — myself included — have to chop and change to find the right drugs and doses. I don’t like taking meds, but I have accepted I need them. Regular contact with a therapist is another key factor, but there are heaps of different approaches, and you have to find the right person (or team) for you, then build a therapeutic relationship with them. It’s sort of like dating — you wouldn’t go on multiple dates with someone without feeling some kind of connection developing. Unfortunately, there is no right or left swipe system for finding a suitable (and available) psych, and they barely ever buy you a drink before you take your metaphorical clothes off. 8. The system for getting help is pretty broken, and mental illness generally gets a bad rap. When I first started experiencing symptoms, I was given a number of different diagnoses from depression to bipolar disorder to borderline personality disorder (BPD) . One professional saw me for less than seven minutes, at 5:30 a.m. after a night of no sleep in an ER cubicle on my own (and ankle deep in what I recognize now as acute psychosis ) and promptly told me I was making it all up for attention, then sent me home. In the early days, medical staff told me (or wrote in my notes while I read them upside down) that I had “low resilience,” “low intelligence” and was “non-compliant” and “hysterical.” Doesn’t exactly fill a person with confidence. I also spent some time as an inpatient in a public mental health facility. It was decidedly less than fun. I am incredibly lucky to have found a way out of an overloaded and underfunded public system. The people you hear about on the news, the ones we are taught to fear or ignore: they are not the face of mental illness . They are usually the exceptions to the rule. 9. Schizophrenia is for life, but it doesn’t have to be a life sentence. It’s been three years now since I was diagnosed. It hasn’t always been easy, but it’s not completely crap either. I have learned a lot of things about myself, met some pretty awesome people who have labels of their own, and I have some absolutely amazing people in my corner. The last couple of weeks have been full-on, and at times it’s been a challenge to keep old mate Boris in the background. One of those absolutely amazing people I spoke of earlier pointed out to me today that 18 months ago, I would have probably been admitted to hospital by now. Do not pass go, do not collect $200. Instead, I am still in control, being (mostly) sensible and working through it, even though that means hard conversations and tough decisions. Yesterday, I sat down thinking I wanted to write something about what it feels like to be unwell, and I couldn’t organize my thoughts well enough to explain. Today I can. Whatever tomorrow brings… bring it on. A version of this article was previously published on mentalhealthtalk.info. Follow this journey on the author’s blog.

Jane Alexandra

What I'd Like You to Know About Living With Schizophrenia

I am 35 years old. I have two university degrees in education and am working on a third in psychology. I have a regular, somewhat demanding job that most of the time I like to think I am pretty good at. I like to sing, to paint, to write and to devour books like words are going out of fashion. I am in a steady relationship with a wonderful man, have amazing friends and family, and generally love the life I have created for myself. I also carry a secret. It’s three years old, but not a toddler, though there are occasionally invisible tantrums involved. It requires constant monitoring and management of medication, but I have to see a psychiatrist to do this, not a GP. It sometimes lands me in hospital, but can’t be fixed on an operating table or with IV fluids. I am schizophrenic. As far as I’m aware, when you tell people you have a physical illness or a dodgy back, they tend to accept that those things don’t change who you are as a person, or make you a liability. When you tell people you have a mental illness , the reactions sometimes – not always – range from disbelief (“You seem so normal!”) to mistrust (“Does the TV send you messages?”) to avoidance (“You probably wouldn’t have wanted to come to that party anyway.”). You become an unknown entity, someone to be wary of. A time bomb. When I am well, all the things I told you about myself are true. When I’m not, they are still true, but occasionally they get buried the further I fall into acute illness. Sometimes I can’t work, or follow the plot of a book, and all the colors on my palette start to feel like different shades of black. I have learned over the last three years not only to (mostly) accept it, but to control it, and I am incredibly lucky to have a great support network to help me do this. For those who are caring for, or know someone with schizophrenia or another illness with psychosis, or just want to understand more about what it feels like, here are some things I’d like you to understand about my experience w ith schizophrenia (that I can’t always say out loud)… 1. I can’t just snap out of it, or ignore it. This can be super frustrating to hear. Sometimes, I describe my (occasional) reality as having the TV and the radio on loud at the same time, while trying to read a book and have an intense conversation. It works as a descriptive )and you should try it sometime), but keep in mind that once you’re done trying it, you can remove the distractions with the flick of a switch and go on with your day. For me, it isn’t that easy. 2. There isn’t always a reason for a bad day. Schizophrenia is a chemical imbalance. Yes, symptoms are often triggered by external events like not getting enough sleep, stress or big life changes. But, then there are other days when I wake up and it’s noisy in my head for no reason I can pinpoint. This is frustrating enough, and even more so when you ask me what’s wrong… but what you really mean is why are things going wrong. You mean well, and you want something you can point to as a trigger and offer advice on, but sometimes there just isn’t one. It doesn’t mean my experience is any less real, or less hard. 3. There are two types of symptoms in schizophrenia (and other mental illnesses). They are: positive and negative. And you’re probably thinking “well, positive sounds OK!” Positive symptoms add something to my life, but it’s not like winning the lottery or getting a free coffee. It adds voices, or whistles, or static-like noise. Sometimes I see shapes and shadows that vanish when I look more closely. Occasionally, people’s faces change into something frightening, or I hear a different set of words than what’s coming out of their mouths. Negative symptoms are easier to understand: it’s losing things from your life, like the ability to concentrate, or motivate yourself, or get dressed. For me, the positive usually happens first. It makes me doubt what is real, what I see, what you say. It chips away at all the stuff that makes me me. Imagine traveling somewhere you don’t speak the language. Your senses are in overload trying to absorb all the unfamiliar things. You can’t read the street signs, and when people approach you, you don’t know whether they are offering help or chastising you. Now, imagine you’re in a place you know well, but everything above applies and suddenly nothing is familiar or safe. It. Sucks. 4. If I bail on stuff, it’s not a reflection on you. I am constantly at war between wanting to participate in life and wanting to run away. When things are noisy in my head, everything gets so much harder. I can hide it from you for a while, but it’s like walking in dry sand: the longer you try, the harder it gets to keep moving forward. I’m pretty good at “performing,” and it might seem like everything is OK, but inside, I’m screaming. The louder it is in my head, the more energy it takes to pretend it’s quiet. It’s exhausting, and sometimes I just can’t stay after dinner for coffee, or show up at all. It’s not because you’re bad company, or that you’ve done something wrong. I’m just too tired, and maybe I don’t want to perform (because it feels like lying) but I also can’t risk telling you the truth. Also, see #5 and #6. 5. I don’t mean to seem ungrateful or difficult. It is a struggle to know sometimes how to explain where I’m at, and what to tell you when you ask how you can help. Something that helps one day might not help the next, and I don’t know how to tell you that without confusing the shit out of you or alienating you. It is easier to either deny I’m having a bad day at all, or accept whatever you’re offering without telling you it isn’t what I need today. Because you are somehow still here, offering your friendship and support, and that means so much to me. I know you mean well, and you are trying so hard to help, and I don’t want to make you feel bad. And tomorrow, or the next day, or in a week, I might want that hug, or to talk it through, or to go for a walk. I don’t want to burn any bridges. 6. I do trust you, but I also want to protect you. Sometimes, while we are talking, someone in my head is telling me that if I confide in you, one of us will get hurt, or injured, and it will be my fault. Sometimes they say you are out to get me, or just pretending to care. On a good day, I know you’re not pretending and that you genuinely want to help, but they are very persuasive and I want to protect you. It might seem like I’m dodging your questions or actively pushing you away, and I get that it’s frustrating for you. I feel incredibly guilty a lot of the time about being “too hard to deal with” or being a burden on the people I love. That means I will usually try to spare you from the finer details. When things aren’t great in my head, I hurt and I don’t want you to hurt too. 7. There are no wonder drugs and no quick fixes. Medication is a key part of treatment, but most antipsychotic drugs have side effects and there are a lot of different types and combinations. Some people find one that works for them fairly quickly, while others — myself included — have to chop and change to find the right drugs and doses. I don’t like taking meds, but I have accepted I need them. Regular contact with a therapist is another key factor, but there are heaps of different approaches, and you have to find the right person (or team) for you, then build a therapeutic relationship with them. It’s sort of like dating — you wouldn’t go on multiple dates with someone without feeling some kind of connection developing. Unfortunately, there is no right or left swipe system for finding a suitable (and available) psych, and they barely ever buy you a drink before you take your metaphorical clothes off. 8. The system for getting help is pretty broken, and mental illness generally gets a bad rap. When I first started experiencing symptoms, I was given a number of different diagnoses from depression to bipolar disorder to borderline personality disorder (BPD) . One professional saw me for less than seven minutes, at 5:30 a.m. after a night of no sleep in an ER cubicle on my own (and ankle deep in what I recognize now as acute psychosis ) and promptly told me I was making it all up for attention, then sent me home. In the early days, medical staff told me (or wrote in my notes while I read them upside down) that I had “low resilience,” “low intelligence” and was “non-compliant” and “hysterical.” Doesn’t exactly fill a person with confidence. I also spent some time as an inpatient in a public mental health facility. It was decidedly less than fun. I am incredibly lucky to have found a way out of an overloaded and underfunded public system. The people you hear about on the news, the ones we are taught to fear or ignore: they are not the face of mental illness . They are usually the exceptions to the rule. 9. Schizophrenia is for life, but it doesn’t have to be a life sentence. It’s been three years now since I was diagnosed. It hasn’t always been easy, but it’s not completely crap either. I have learned a lot of things about myself, met some pretty awesome people who have labels of their own, and I have some absolutely amazing people in my corner. The last couple of weeks have been full-on, and at times it’s been a challenge to keep old mate Boris in the background. One of those absolutely amazing people I spoke of earlier pointed out to me today that 18 months ago, I would have probably been admitted to hospital by now. Do not pass go, do not collect $200. Instead, I am still in control, being (mostly) sensible and working through it, even though that means hard conversations and tough decisions. Yesterday, I sat down thinking I wanted to write something about what it feels like to be unwell, and I couldn’t organize my thoughts well enough to explain. Today I can. Whatever tomorrow brings… bring it on. A version of this article was previously published on mentalhealthtalk.info. Follow this journey on the author’s blog.

Jane Alexandra

What I'd Like You to Know About Living With Schizophrenia

I am 35 years old. I have two university degrees in education and am working on a third in psychology. I have a regular, somewhat demanding job that most of the time I like to think I am pretty good at. I like to sing, to paint, to write and to devour books like words are going out of fashion. I am in a steady relationship with a wonderful man, have amazing friends and family, and generally love the life I have created for myself. I also carry a secret. It’s three years old, but not a toddler, though there are occasionally invisible tantrums involved. It requires constant monitoring and management of medication, but I have to see a psychiatrist to do this, not a GP. It sometimes lands me in hospital, but can’t be fixed on an operating table or with IV fluids. I am schizophrenic. As far as I’m aware, when you tell people you have a physical illness or a dodgy back, they tend to accept that those things don’t change who you are as a person, or make you a liability. When you tell people you have a mental illness , the reactions sometimes – not always – range from disbelief (“You seem so normal!”) to mistrust (“Does the TV send you messages?”) to avoidance (“You probably wouldn’t have wanted to come to that party anyway.”). You become an unknown entity, someone to be wary of. A time bomb. When I am well, all the things I told you about myself are true. When I’m not, they are still true, but occasionally they get buried the further I fall into acute illness. Sometimes I can’t work, or follow the plot of a book, and all the colors on my palette start to feel like different shades of black. I have learned over the last three years not only to (mostly) accept it, but to control it, and I am incredibly lucky to have a great support network to help me do this. For those who are caring for, or know someone with schizophrenia or another illness with psychosis, or just want to understand more about what it feels like, here are some things I’d like you to understand about my experience w ith schizophrenia (that I can’t always say out loud)… 1. I can’t just snap out of it, or ignore it. This can be super frustrating to hear. Sometimes, I describe my (occasional) reality as having the TV and the radio on loud at the same time, while trying to read a book and have an intense conversation. It works as a descriptive )and you should try it sometime), but keep in mind that once you’re done trying it, you can remove the distractions with the flick of a switch and go on with your day. For me, it isn’t that easy. 2. There isn’t always a reason for a bad day. Schizophrenia is a chemical imbalance. Yes, symptoms are often triggered by external events like not getting enough sleep, stress or big life changes. But, then there are other days when I wake up and it’s noisy in my head for no reason I can pinpoint. This is frustrating enough, and even more so when you ask me what’s wrong… but what you really mean is why are things going wrong. You mean well, and you want something you can point to as a trigger and offer advice on, but sometimes there just isn’t one. It doesn’t mean my experience is any less real, or less hard. 3. There are two types of symptoms in schizophrenia (and other mental illnesses). They are: positive and negative. And you’re probably thinking “well, positive sounds OK!” Positive symptoms add something to my life, but it’s not like winning the lottery or getting a free coffee. It adds voices, or whistles, or static-like noise. Sometimes I see shapes and shadows that vanish when I look more closely. Occasionally, people’s faces change into something frightening, or I hear a different set of words than what’s coming out of their mouths. Negative symptoms are easier to understand: it’s losing things from your life, like the ability to concentrate, or motivate yourself, or get dressed. For me, the positive usually happens first. It makes me doubt what is real, what I see, what you say. It chips away at all the stuff that makes me me. Imagine traveling somewhere you don’t speak the language. Your senses are in overload trying to absorb all the unfamiliar things. You can’t read the street signs, and when people approach you, you don’t know whether they are offering help or chastising you. Now, imagine you’re in a place you know well, but everything above applies and suddenly nothing is familiar or safe. It. Sucks. 4. If I bail on stuff, it’s not a reflection on you. I am constantly at war between wanting to participate in life and wanting to run away. When things are noisy in my head, everything gets so much harder. I can hide it from you for a while, but it’s like walking in dry sand: the longer you try, the harder it gets to keep moving forward. I’m pretty good at “performing,” and it might seem like everything is OK, but inside, I’m screaming. The louder it is in my head, the more energy it takes to pretend it’s quiet. It’s exhausting, and sometimes I just can’t stay after dinner for coffee, or show up at all. It’s not because you’re bad company, or that you’ve done something wrong. I’m just too tired, and maybe I don’t want to perform (because it feels like lying) but I also can’t risk telling you the truth. Also, see #5 and #6. 5. I don’t mean to seem ungrateful or difficult. It is a struggle to know sometimes how to explain where I’m at, and what to tell you when you ask how you can help. Something that helps one day might not help the next, and I don’t know how to tell you that without confusing the shit out of you or alienating you. It is easier to either deny I’m having a bad day at all, or accept whatever you’re offering without telling you it isn’t what I need today. Because you are somehow still here, offering your friendship and support, and that means so much to me. I know you mean well, and you are trying so hard to help, and I don’t want to make you feel bad. And tomorrow, or the next day, or in a week, I might want that hug, or to talk it through, or to go for a walk. I don’t want to burn any bridges. 6. I do trust you, but I also want to protect you. Sometimes, while we are talking, someone in my head is telling me that if I confide in you, one of us will get hurt, or injured, and it will be my fault. Sometimes they say you are out to get me, or just pretending to care. On a good day, I know you’re not pretending and that you genuinely want to help, but they are very persuasive and I want to protect you. It might seem like I’m dodging your questions or actively pushing you away, and I get that it’s frustrating for you. I feel incredibly guilty a lot of the time about being “too hard to deal with” or being a burden on the people I love. That means I will usually try to spare you from the finer details. When things aren’t great in my head, I hurt and I don’t want you to hurt too. 7. There are no wonder drugs and no quick fixes. Medication is a key part of treatment, but most antipsychotic drugs have side effects and there are a lot of different types and combinations. Some people find one that works for them fairly quickly, while others — myself included — have to chop and change to find the right drugs and doses. I don’t like taking meds, but I have accepted I need them. Regular contact with a therapist is another key factor, but there are heaps of different approaches, and you have to find the right person (or team) for you, then build a therapeutic relationship with them. It’s sort of like dating — you wouldn’t go on multiple dates with someone without feeling some kind of connection developing. Unfortunately, there is no right or left swipe system for finding a suitable (and available) psych, and they barely ever buy you a drink before you take your metaphorical clothes off. 8. The system for getting help is pretty broken, and mental illness generally gets a bad rap. When I first started experiencing symptoms, I was given a number of different diagnoses from depression to bipolar disorder to borderline personality disorder (BPD) . One professional saw me for less than seven minutes, at 5:30 a.m. after a night of no sleep in an ER cubicle on my own (and ankle deep in what I recognize now as acute psychosis ) and promptly told me I was making it all up for attention, then sent me home. In the early days, medical staff told me (or wrote in my notes while I read them upside down) that I had “low resilience,” “low intelligence” and was “non-compliant” and “hysterical.” Doesn’t exactly fill a person with confidence. I also spent some time as an inpatient in a public mental health facility. It was decidedly less than fun. I am incredibly lucky to have found a way out of an overloaded and underfunded public system. The people you hear about on the news, the ones we are taught to fear or ignore: they are not the face of mental illness . They are usually the exceptions to the rule. 9. Schizophrenia is for life, but it doesn’t have to be a life sentence. It’s been three years now since I was diagnosed. It hasn’t always been easy, but it’s not completely crap either. I have learned a lot of things about myself, met some pretty awesome people who have labels of their own, and I have some absolutely amazing people in my corner. The last couple of weeks have been full-on, and at times it’s been a challenge to keep old mate Boris in the background. One of those absolutely amazing people I spoke of earlier pointed out to me today that 18 months ago, I would have probably been admitted to hospital by now. Do not pass go, do not collect $200. Instead, I am still in control, being (mostly) sensible and working through it, even though that means hard conversations and tough decisions. Yesterday, I sat down thinking I wanted to write something about what it feels like to be unwell, and I couldn’t organize my thoughts well enough to explain. Today I can. Whatever tomorrow brings… bring it on. A version of this article was previously published on mentalhealthtalk.info. Follow this journey on the author’s blog.

Community Voices

of barbed tongues and bulletholes


If my illness could talk, he would laugh at the supposition that he ever stops
He is always there, the drum beat
of the backbone
of the chatter that trickles like water

Sometimes he pours comfort over my aching skin
Or whispers the risks of my existence gently in the night
Without this I feel stripped bare and alone
Like losing a close friend

Even though that friend has a barbed-wire tongue
And carries tiny daggers aimed to wound
Little bulletholes of anger and mistrust

And then he is gone and the world dims in the fog of medication
I realize then
It is not the chatter that scares me
But the quiet

When it is quiet
All I can hear is my own heart
Beating its staccato rhythm into the void
I wonder if this is what normal feels like
And I wish all at once
That it was forever and never quiet
#MightyPoets

Community Voices

I am 35 years old. I have two university degrees in education and am working on a third in psychology. I have a regular, somewhat demanding job that most of the time I like to think I am pretty good at. I like to sing, to paint, to write, and to devour books like words are going out of fashion. I am in a steady relationship with a wonderful man, have amazing friends and family, and generally love the life I have created for myself.

I also carry a secret. It’s three years old, but not a toddler, though there are occasionally invisible tantrums involved. It requires constant monitoring and management of medication, but I have to see a psychiatrist to do this, not a GP. It sometimes lands me in hospital, but can’t be fixed on an operating table or with IV fluids.

I am schizophrenic.

When you tell people you have diabetes or a dodgy back, they tend to accept that those things don’t change who you are as a person, or make you a liability. When you tell people you have a mental illness, the reactions sometimes – not always – range from disbelief (“You seem so normal!”) to mistrust (“Does the TV send you messages?”) to avoidance (“You probably wouldn’t have wanted to come to that party anyway.”). You become an unknown entity, someone to be wary of. A time bomb.

When I am well, all the things I told you about myself are true. When I’m not, they are still true, but occasionally they get buried the further I fall into acute illness. Sometimes I can’t work, or follow the plot of a book, and all the colors on my palette start to feel like different shades of black. I have learnt over the last three years not only to (mostly) accept it, but to control it, and I am incredibly lucky to have a great support network to help me do this.

For those who are caring for, or know someone with schizophrenia or a psychotic illness, or just want to understand more about what it feels like, go here to read what I’ve written about the things I’d like you to know (but can’t always say aloud):

theworldismyapple.net/2019/06/22/and-why-the-sea-is-boiling-...

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