Telling Others About Your Illness

For a long time, I actively rebelled against disclosing any information about my schizophrenia, even avoiding the subject matter altogether so that I wouldn’t have to tell people I had it.

I remember bringing one of my books to a friend at a bar one night, and an older woman struck up a conversation with me about it. Disclosing was pretty unavoidable due to the book being specifically about my psychotic break. When she asked me if I had schizophrenia and I said yes, she actively recoiled and shook her head as if to get a rotten taste out of her mouth.

In another instance, I was on a first date with a woman and she asked what I did, as is customary, but against my better judgment, I told her that I write about living with schizophrenia, she proceeded to ask if I have ever killed anybody.

The point of all this is to say that schizophrenia is a frightening word and, though it has lessened in recent years, there is still a great deal of stigma surrounding major mental illnesses.

Those instances are only two examples of myriad circumstances I’ve been part of where disclosing my illness has dramatically altered and in some cases ended entire interactions.

Throughout my writing career it’s been a challenge not to disclose, given the subject of my work, and I’m sure that contributed to a long period of burnout I experienced for almost 5 years.

During that time though, I didn’t have to tell anybody and that was a breath of fresh air.

Also during that time, society shifted its view of mental illness thanks to the millions of young people being open about their anxiety and depression on social media and across the internet.

Many famous people have also disclosed their struggles with mental illness.

Because of that, the word “schizophrenia” doesn’t have the weight it used to, and people, myself included, are more willing to speak about their struggles with the illness.

That said, if you’re afraid to tell people about your diagnosis, that is perfectly valid and rational given the media’s portrayal of major mental illness and the resulting stigma.

You don’t have to tell anyone if you don’t want to and it’s perfectly acceptable to keep it to yourself.

Hopefully you have a strong circle of support where you can feel safe discussing your struggles but if you don’t there are groups and resources available.

Disclosing your illness is entirely up to you.

Even I’m still guarded about it but if you feel compelled to express yourself and find community, this blog is a safe space.

I wish you guys the best and please remember, you’re never alone.

What it’s Really Like Inside A Psychiatric Hospital

There’s a lot of fear surrounding mental hospitals for various reasons.

Whether it’s the stigma surrounding the unmedicated psychiatric patient, or the numerous media portraying either haunted and abandoned psychiatric hospitals or psychiatric hospitals as essentially prisons full of crazy people, a lot of people are freaked out by the very mention of them.

There seems to be a lot of misinformation about what exactly a psychiatric hospital is and what it’s for though.

The main purpose of psychiatric hospitals is to provide, essentially a resting and rehabilitation place for people struggling with mental illness, primarily those who have exhibited behavior that could be harmful to themselves or others.

While this sounds scary, the majority of the time those patients are just there for the potential of hurting themselves (e.g. suicide attempts, delusional thinking or manic episodes). They are there primarily to rest and get a better handle on themselves through group and focused activities.

The closest thing I can compare it to is like a preschool or summer camp, except everyone is a little nuts.

I wish I had fully realized that when I was a patient in one.

The problem for me was that I was terrified of being crazy and in my brain, at the time, I painted the hospital experience as some oppressive prison where I was being locked away for being a non-conformist mentally ill menace to society.

I viewed it as a betrayal by my parents for putting me there and for treating me like I was some messed up defect that needed to be locked up.

The truth is, I willingly signed the forms for a voluntary 72-hour hold for observation and I fully recognized that something wasn’t right with me.

Whether or not I was fully in the right mind to be cognizant of what I was doing could be a matter of contention.

Further, I believed it would only be 72 hours and I think the betrayal aspect only took hold when I was informed by the doctors that I would only be released when I seemed ready (which turned out to be another five days).

Disregarding the negative connotations and conceptions I had of the place though, it was a relatively soothing environment.

Clean, white walls, private rooms where you could sleep all day if you felt like it, a day room where you could watch tv, play games or relax on couches, and music and art classes, all tied together with rehabilitation focused group therapy and doctor’s visits.

In complete honesty, it really wasn’t that bad.

Certainly not a prison, as one might have you believe.

It’s hard to realize that when you’re in the midst of a breakdown though.

Things are very scary and the only thing you want in the world is to just go home and get into bed.

I won’t forget my time there and I’ve pledged never to go back but in hindsight, my perception of mental hospitals was askew thanks to the chemical imbalance in my brain.

Psychiatric hospitals though, are nothing like the scary pictures of it that I’m sure a lot of you imagine. They are calm, quiet places, where people mostly keep to themselves and where everybody just wants to be left alone. Sure there are outliers but everyone there is suffering in one or another and keeping that in mind helps to humanize the place.

If you happen to find yourself there, try to remember that it’s supposed to be a place to relax, away from the stress of society, it’s supposed to be a place to calm down and get a handle on yourself, not a decrepit prison full of unhinged psychopaths who would kill you at a moments notice.

Overall, it’s ok if you need to take a break somewhere like that, they’re there to help.

The Weight of Depression

It’s no mystery why a good amount of people living with schizophrenia or other major mental illnesses also suffer from depression, sometimes severe.

Be it a function of the illness itself or just the weight of dealing with the extreme circumstances of mental illness, depression is a very real concern.

Mood disorders and mental illness are essentially dance partners in that they move together and affect one another in different ways.

Symptoms of one disorder could trigger symptoms of the other and finding a balance where you can be stable is a long process.

It takes a tremendous amount of self awareness to realize when something is affecting you and manifesting depression.

A drop in mood can set off paranoia and even delusions.

Truly, depression is a serious concern for people living with major mental illness as well as those who don’t exhibit any other symptoms.

Depression can come on as a result of any number of things from the weather, to stress, to relationship issues, and even issues arising at work. It can also come out of nowhere.

In my case, most of the depression I experience is a result of seasonal affective disorder where people report depression symptoms as a result of the changing seasons.

Weirdly though, it’s reversed for me.

Summer is the worst time for me and I’m not entirely sure why.

Every year in the dog days of summer around mid July to August I get the overwhelming urge to just hole up in my apartment, disengage, and isolate.

I just feel miserable.

I’ve contemplated extreme measures like suicide hundreds of times in my life and it never seems to be as strong as it in the deep hot days of summer.

Depression also comes along for me when I’m worried about something for a long time. Most of the time it’s money or relationships but it’s also been times when I just didn’t feel settled, either in work or in life.

Thankfully there were meds to help and along with therapy, I found pathways to feeling better.

It’s an insidious disease though, it can affect every facet of your life to the point where you can’t even fathom getting out of bed in the morning.

It can even make you want to end things.

The desire to kill yourself is a dark and sharp knife that slices at you in the worst moments, it physically hurts to be that depressed.

I wouldn’t choose that feeling for anything.

This is all to say though, that if you’re suffering, I see you, I feel what you’re going through, I’ve been there more times than I can count.

I want you to know that you will eventually feel better.

Meds and therapy can help but time is also the great healer and although it may not seem like it, you’ll come out of it.

It takes an immense amount of strength to carry on when you’re walking through that dark valley but it’s important that you do.

It’s important that you take care of yourself and do what you can to make yourself feel better. Whether that’s calling your mom, or taking a shower or eating a good meal you need to treat yourself well.

Being kind to yourself in moments of darkness can save your life.

If you’re suffering, you can get through this and you can come out the other side. There is help for you if you want it.

I hope you’re ok.

If you or a friend are considering suicide The National Suicide Hotline can provide help for your suffering, Anywhere in the US, at any time just dial 988 and someone can talk.

How to Find Your Stability

The process of finding a relative stability after a diagnosis of schizophrenia or any other major mental illness can take a long time, sometimes years.

You have to contend with the symptoms of your illness (which may never go away completely), the stigma and the emotional toll of having mental illness, the various side effects of your meds, and relearning how to be a functional member of society.

I consider myself mostly stable (after 17 years) but I still have blips a few times a year, as I imagine most people in our situation do.

I still suffer from bad paranoia and anxiety, and I still fall into delusional thinking from time to time.

I think all of this is par for the course when you have mental illness and while we may not have asked for this massive disruption in our lives, it’s important to know that we’re not alone in dealing with all of this.

I can guarantee you that every complication, every hard time and every weird situation you’ve gone through with this stuff, another person has experienced.

How do we find our stability though? Or how do we find at least a stable foundation on which to stand?

Just like with any other big life change it requires a steady process of making small improvements to your life, to the way you think, and to how you interact with the world.

Every new day is a chance to do something to support your recovery.

It could be working on your sleep hygiene, and getting better sleep. It could be committing to take a shower and brush your teeth. Or it could just be the simple act of getting up out of bed.

These things can be extremely hard somedays but the fact that you’re choosing to do them means you’re trying and trying is all we can do.

Think of it like this, they say Rome wasn’t built in a day and your stability won’t be either.

If you lay one brick a day, and that’s all you can do, you deserve applause.

Eventually, as the days pass and you keep laying that one brick, you’ll get to a point where all of the bricks you’ve laid have built a house and you’ll say to yourself, “How the hell did I do that?”

As you built that house you also learned building techniques, how to use all the various tools you need, and all the little tricks that make building easier.

What I’m saying is that this house is your stability and you’ve learned the things you need not only to build, but also maintain this house that you now live in.

Just like a house, your stability will protect you from bad weather (negative symptoms) and give you a place of comfort to call your own.

Your house is your sanctuary, and your stability will be a sanctuary too, it’ll give you footing for making it through the day and even taking on bigger challenges if you choose to do so.

It seems incredibly daunting to get there when you’re first diagnosed but if you keep waking up, and keep placing that brick everyday you’ll get there.

All it takes is just one little piece of progress a day.

You can do it, and if you need help there are plenty of options for you.

We’re not alone in this, and we’re all rooting for you.

The Case for Taking Your Meds

It’s a strange thing that when you’re stable, you kind of forget that you’re sick.

Things could be going well, you could feel happy and you think, “Am I cured?”

Hopefully you’re aware that things don’t happen like that and schizophrenia or any other major mental illness is a lifelong condition.

Still, some people start to believe that their meds are either, not doing anything, or that they don’t need them anymore.

I, as a mental health peer and advocate, have to unequivocally refute that and tell you, yes, you still need your meds.

Aside from the stigma of mental illness in general on the public’s behalf, there exists a stigma among people with mental illnesses that meds are bad, that the chaos in your brain is good and that pharmaceutical companies and the government are just trying to keep you quiet and keep you in the dark by making you numb.

I used to think that too until I realized how much better it felt being numbed and quieted than battling these crazy thoughts day and day out. I

don’t want to be crazy and that’s why I adhere to meds.

There’s also the argument that back before modern society, people with schizophrenia were seen as healers, oracles or witchdoctors having a direct connection to the gods, and that if you take your meds, you lose that connection and mysticism of being at one with the universe.

I don’t know if that’s true but I can tell you that in modern society, those beliefs don’t serve us like they would back then.

Also, I take my meds and I still hear God, so that argument can’t be that sound. (that was a joke).

I can even remember that the only reason I started taking the meds in the hospital was to get out sooner, but I realized they were working against the voices and the delusions so I never stopped.

The point is, these meds were researched and engineered in order to give us a better life in today’s modern society.

They are there to help us, not harm us.

My brother always uses the expression “better living through chemistry” and he’s right, I do feel better and I’m able to do more things when I do take my meds.

I don’t want to battle day in and day out for scraps of sanity and I don’t wanna feel like I don’t have control over my own faculties.

I’m a proponent for taking your meds and I think it’s an important thing to do, not just for you and your thoughts, but also for the people around you who love you and don’t know how to interact with you when you’re out of control.

Recalling the feeling of thinking you cured, this happens to me all the time, I’ll forget that I’m actually sick and then for some reason, I’ll accidentally miss a dose and woohaa, here come the delusions.

I would like to not be subject to the inconsistencies of my broken brain.

I hope you feel that way too.

So I’m here to say, take your meds, stay hydrated and get plenty of rest. It can be hard dealing with this stuff.

You’re not alone and you got this.

The Spoon Theory

There’s a famous blog post written by Christine Miserandino called The Spoon Theory (click here) which details a metaphor she came up with to explain fatigue due to chronic illness to her friend.

This theory has gone on to spawn a thriving online community who refer to themselves as spoonies and has been detailed in numerous publications from WebMD to Healthline.

Christine came up with the theory when she was at a diner with her friend and her friend asked her what it was like to live with chronic illness.

Trying to find something to illustrate the struggle, Christine used the example of spoons. She related the spoons to the amount of energy she had each day to do normal everyday things like chores, tasks, errands and seeing friends.

Essentially, each activity required a set amount of spoons that needed to be spent in order to complete that activity.

She explained that neurotypical people (normal people) or those without chronic illness seem to be dealt an unlimited set of spoons throughout their day allowing them to complete all their tasks like normal.

Chronically ill or neurodivergent people (people with mental health issues) on the other hand seemed only to be dealt a limited number (Say 5). Because of this, those who are suffering with illness need to be very diligent about how they spend their spoons.

I remember when I first read this, it blew my mind and finally gave me a basis to explain why I had so little energy to do things during the day.

I had always worried that I was just lazy, but the phenomenon is very real and it’s called executive dysfunction.

It seems that most people who are suffering with mental illness are familiar with the feeling of not being able to do everything they’d like to because they simply don’t have the energy.

It takes a lot of work to deal with mental illness and chronic illness in general, and there’s so many things neurodivergent people have to take into account through their day that their energy is always sapped pretty quickly with just the most basic tasks.

They just don’t have enough spoons.

I, along with my family, have taken this theory to heart and still today, many years after I first introduced them to the idea, I’m able to tell them I don’t have the spoons when I just can’t get myself to do something.

This theory has changed the way my family sees the everyday implications of living with mental illness and it’s brought clarity to so many people that just didn’t have a way of explaining the energy expenditure of dealing with chronic illness day in and day out.

It’s important to know, as a person who’s struggling, that what I’m feeling is not uncommon, that it’s been well documented and that there’s even a name for it.

Labels for the things you’re going through provide a sort of stability and comfort in that, whatever it is, it’s not just happening to you.

Today I am still a proud spoonie and I use the metaphor consistently to explain what it’s like to live with a mental illness.

I’ve included a link to the original post here, maybe it will help those of you who are struggling everyday and give you a better understanding of why you are the way you are.

It’s a great read for your family as well.

All in all, It’s important to know you’re not alone in how you feel and there are reasons for the things you do. You’re gonna be ok.

Schizophrenia’s Effect on Family

I can remember the weeks after coming out of the hospital and moving back in with my parents, it was a scary time, to say the least.

I was riddled with paranoia and delusions, my meds weren’t right yet and I was suffering from a host of side effects, and though I had been cleared to be released, I was still very very sick.

Remembering some of the things I did and said to my family in those weeks still haunts me, and over the years I’ve had time to look back on what I was like and sit in mortified embarrassment thinking on it.

At one point I was playing the piano with my mom and she reached over across my lap to play, and for some reason the first thought in my head was that she was trying to sexually harass me.

Another instance involved accusing my dad of cutting the brake lines in my car after we had replaced the brake pads.

I was a monster to my family in those early days but I hope they realize that I was just trying and suffering in a really really bad way.

The fact is, schizophrenia (and any mental illness) can really test a family. For many it’s a breaking point causing division. I even remember my mom telling me, later on, that she even went to her own doctor for depression over my behavior.

I count myself incredibly grateful for the strength and the love of my family in those days, and I realize that that type of stuff can just be too much for some families.

My parents’ love was never more apparent than when they chose to educate themselves as much as possible on mental illness nearly the moment after I received a diagnosis. They went to the bookstore and bought every book they could find on my condition in an attempt to understand, even just fleetingly, what this meant for me, and them, and the family.

Later they took it upon themselves to attend and even teach a class on having family members with mental illness.

I worry I never properly thanked them enough for taking that initiative because that class changed everything they understood about mental illness. It gave them a basis and starting point for understanding the reality of what this diagnosis meant.

Mental illness can be incredibly tough on families if they don’t understand it. It can cause resentment, divorce, and sometimes even homelessness. Many times, they don’t even understand that something is wrong with their loved one and they justify the behavior by saying they’re just looking for attention or they took too many drugs; if they just stop, things will go back to normal.

It doesn’t seem to really click until a diagnosis by a healthcare professional confirms mental illness. And even then, they could refuse to believe it as anything other than personal shortcomings.

Mental Illness and schizophrenia though, are very real, and they’re there for life.

In my experience the best thing a family can do when they have someone newly diagnosed with mental illness is to educate themselves, attend classes and look into support groups for learning how to take care of their loved one.

Know that it’s a long hard process to get back to stability and understand that the suffering their loved one is experiencing is sometimes too hard to explain in words.

Be there for your loved one, that’s really all they want and need, just be there.

Talk without criticism when they want to talk and just love them to the best of your ability.

The knowledge that someone is with you and has your back can make or break recovery for those diagnosed, it can mean the world in that dark place.

It will be hard, and it will be long but eventually you’ll get to a point as a family where things are easy again, and where things are stable.

You’re not alone in this struggle and you can make it out the other side. I know this and my family knows this.

It’s gonna be ok.

The Pain of Being Labeled Insane

There’s a lot of freewheeling use of the word insane, sometimes to illustrate how epic something is or how unlikely something is, other times it’s used to describe quirkiness or just general randomness.

Derogatory use of the word doesn’t come up that much anymore, given the shifting attitudes and lessened stigma towards mental illness, but when I was diagnosed 17 years ago, the word insane was like a brick being thrown from a fourth story window, and coming down to strike me just as I walked under it.

There’s a certain kind of rejection you feel when you receive a diagnosis of schizophrenia. Especially if you don’t have a lot of understanding of the mental illness sphere.

It’s almost a death sentence, or at the very least a sentence to be shunned from the rest of society for the rest of your life. It’s a painful word and it cuts at you especially in the moment you’re most vulnerable (i.e. being in the hospital after a psychotic break).

To be told that you are not normal, that you are off and that you will be for the rest of your life is like receiving news that the person closest to you has died and you will be alone from here on. Except in this case the person closest to you is yourself (or the person your delusions made you believe you were), and now you have to essentially kill that person by taking these meds twice for the remainder of your natural life.

I chose to take the meds because I was terrified of being labeled crazy and for some reason I spent the majority of the last seventeen years reacclimatizing myself to the nuances of society and social interaction. I didn’t want anyone, even strangers to know that I was suffering with a mental illness.

I’m over that now and really couldn’t care less what people think of me, but at the time, being so concerned what society would think of me as a crazy person was debilitating. I was terrified of even the smallest social interactions. Combine that with the paranoia and anxiety that are part and parcel of living with schizophrenia and you get, well, not a very good time.

The point I’m trying to make is that the label “crazy” unless used in good fun with friends, can hurt for someone who is newly diagnosed. It can mean a life sentence of being ostracized and it can mean a complete structural breakdown of the beliefs people have held in and of themselves.

Thankfully the stigma around mental illness is lessening theses days with so many young people and celebrities talking about their struggles with mental illness, but it’s important, regardless, to be cognizant of the words you use and the way you speak because you never know who you’re going to cut.