The Process of Recovery

I’ll be the first to tell you that recovery from schizophrenia or any other major mental illness is a very long process, it can take years to get stable, if actual stability is even real.

It’s important to work at it though and be cognizant of the steps you are taking to improve your mental health.

I’d even go so far as to say it’s not so much a process but a journey with the ultimate goal of feeling comfortable in your own skin and in society.

I think I’m at a pretty good point right now, my meds are doing their job for the most part, I haven’t had an episode in about 3 months and I’m slowly getting a better handle on my anxiety.

Granted I don’t go out in public that often and when I do, I usually have to contend with paranoia but in all respects, I feel ok right now and that’s the most I can ask for.

It has taken me 17 years so far to get to this point of relative comfort but along the way, I have learned who I am as a person, what my triggers are, what I do and don’t feel comfortable with and what to do in triggering situations.

I have also amassed a pretty expansive bag of “tools” for dealing with paranoia, anxiety, depression, mania, really anything that comes up so I have a method to cope.

That said, it’s very easy to lose yourself in moments and I still do pretty often.

My point of all this is to illustrate that I still struggle daily with my illness, but 17 years out, I’m used to most of what can happen and it doesn’t affect me nearly as much as it did when I was first diagnosed.

It’s true that I am not what you would consider “healed” but I think the reality of it is that I never will be and the most I can do for myself is to try to build a quiet comfortable life where my symptoms are minimal and I feel at peace.

Recovery from mental illness is not what most neurotypical people would think of as recovery, in that, barring some incredible medical discovery, major mental illness can’t be cured.

The most we can hope for is to find a measure of comfort and stability where are symptoms aren’t affecting us too badly.

That, to me, is success when you’re living with schizophrenia.

It ultimately comes down to learning about, and eventually finding out who you are to the best of your ability.

This includes your preferences, the things that set you off, your fears, the things you’re proud of, your accomplishments and just what exactly makes you tick as a person.

If you know yourself well, you can anticipate and prepare for those moments and situations that might knock you off your game.

You can have the confidence of knowing that whatever happens, you are still you, you are still the person that you have found yourself to be.

In this, if you do get knocked around and lose yourself mentally for a little while, you can always come back to your baseline of who you know you are.

It’s a strange situation living like this and although I don’t want to sound like a life coach, if you know yourself, You know what you can handle.

I think that is essentially stability, or recovery in the most understandable terms.

If you’re not there yet, give yourself time and patience, rely on your support structure and know that whatever happens, you are not alone.

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.

The Tenuous Balance of Stability

Not only does it take work to find stability, but also to maintain it once you’ve found your footing.

Sometimes what’s required is a strict regimen of being faithful to your meds as well as your personal work or therapy.

You’ll find that it’s incredibly easy to slip up on one or another of these things and the result is an inevitable falling back into psychosis.

You may think, somewhere along the way that you feel better and you may even forget that you have a mental illness.

As a result you may become more lax on taking care of yourself and taking your meds but then, in a matter of time, things will start to get strange again.

I’ve been in that position a number of times and in my experience it’s not something I like doing.

In addition every six months, or every year or so you may find that your meds don’t seem to be working as well as they were, it could be a result of increased stress in your life or something else but there may be a very real possibility that you need an adjustment.

That’s ok, and it happens with me and pretty much anyone else who has to deal with this stuff.

Sadly, it’s a lifelong illness and though right now there’s no cure I still have hope for the future.

The point of all this is to say that maintaining your stability can be a challenge.

I can remember a few years back when everything seemed to be going well. I thought I was doing everything right but for one reason or another I got my wires crossed with the pills I was supposed to be taking,

I started taking less of just one of the 6 pills I take, thinking it wouldn’t make a difference. It was ok for a week or two but then I started to experience more paranoia.

I thought everyone was looking at me and judging me and I sort of fell into the delusion that I was being followed.

Things were bright too though, my thoughts were sparkling and I was able to form connections between things that I had all but missed when I was fully medicated.

It was exciting but it also scared the hell out of me.

I want to be in control of myself and I want to keep myself grounded so I called my doctor. Thankfully we got it sorted out and I was back on my way to relative stability.

Suffice it to say that I know what it’s like to lose your footing and while it may not bother some people to the degree that it bothers me, I think stability is important to maintain, no matter how difficult it is to do so.

If you’re experiencing abnormal symptoms or a relapse into delusional thinking, paranoia, and psychosis, I think it’s important to check in with your doctor and be honest about what’s happening.

They can help.

Also, no matter what happens with you in dealing with this illness, please remember that you’re not alone.

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 Myriad Side Effects of Meds

Along with our daily regimen of medication for schizophrenia comes something that can be debilitating for a lot of people, the side effects.

Of course the benefit of the meds far outweighs the trouble we have to go through as a result of the side effects but still, it’s a sad situation that we have to go through these things at all.

I can remember, near the beginning, when I had just gotten out of the hospital and I was on a med called Abilify. While it worked pretty well for the delusions and the voices it gave me a horrible condition called akathisia where I felt like I was unable to sit still.

I had to constantly be moving my body in some way or else it felt like I was going to explode.

I had to relieve this incessantly so I’d take long three hour walks and walk on the treadmill at home constantly, because if I didn’t, I would feel like I wanted to crawl out of my skin.

The doctor said it go away eventually, but I suffered for a good two months before I had to finally stop that med and try to find something different.

Another thing they don’t tell you at first, is that finding the right combination of meds for your particular brand of crazy can be a years-long process.

It’s trial and error of finding something that both works well enough on your brain to be sustainable, as well as something that works with minimal side effects.

It must have taken me five or six years before I finally found a combination that worked well for me.

In the process I ran the gamut of everything from horrible rashes, to sleeping for 12 hours a day, to gaining nearly 80 lbs.

Even still, seventeen years out, we (my psychiatrist and I), have to make periodic adjustments in med dosage to maintain the level of stability where I can feel comfortable.

I still face challenges as well, things like high blood sugar and insomnia that I’ve had to learn to accept as trade-offs for feeling ok.

Many times I’ve remarked that the side effects can be just as bad as the illness itself.

This, however, is not meant to scare you away and discourage you from taking meds though, as I believe anyone with major mental illness needs theses meds to even survive.

This is meant as a sort of preparation for the realities of living with a schizophrenia.

I won’t lie that it’s a very hard life, but you will get used to it, you will feel better and it will become easier as time goes by.

The amazing thing about humans is that we have the ability to adapt.

Even to what seems to be horrible situations we adapt and we learn to get through it.

It makes us incredibly resilient as a result.

We are battle tested and we become ridiculously strong minded.

There’s not a whole lot that life can throw at us anymore that shakes us because we’ve been through the ringer and have lived to tell about it.

At least that’s how I look at it.

Sure it takes time, sometimes a lot of time, but the fight is worth it and once you’re on the stable side you’ll be one of the most incredible people anyone would have the pleasure of meeting.

I’m here to tell you right now that you are not alone in this fight, there a millions of us out here fighting alongside you and we can provide support.

It’s ok to reach if you need help and it’s ok to feel everything you feel as a result of living with this stuff.

It will get better, I promise you that.

Schizophrenia and Love

Everyone’s deserving of love right?

There’s no one on this earth that deserves to be alone but for people with schizophrenia and other major mental illnesses, love and relationships can be incredibly hard to, not only build, but also sustain for a variety of reasons.

First, and I hate to say it but there still exists a pretty unshakeable stigma around the ‘schizophrenia’ label.

A lot of people associate that word with danger, instability, or even violence, and while the fact remains that more people with schizophrenia, in fact, happen to become victims of violent crime than perpetrators, the stigma remains.

In my own experience, I can remember being out on a first date with a woman who, with a straight face, asked me if I had ever killed anybody.

This stigma can be one hell of a red flag for a good number of people who have no experience or knowledge of the reality of mental illness.

Being someone with schizophrenia, I’ve seen this first hand and for a long time I just completely stopped mentioning it at all.

I would change the subject when I was asked what I write about, and I would steer the conversation away from any mention of anxiety or even depression.

Mental illness being one of my core personality quirks left very little to actually talk about as a result.

Another major hurdle to finding love as a person with schizophrenia is that, with my paranoid delusions, I find it incredibly hard to trust people enough to open up and become vulnerable.

Trusting someone fully can take me months if not years, and when you’re dating someone new there comes a point at which you have to open yourself up and get to know the person.

I was never able to get to that point because I could never grasp the possibility that someone besides my family had my best interests at heart.

I was terrified that they would hurt me or leave with no explanation and because of that I’d always break it off before anything got even remotely deep.

I am a wounded soul and I need to trust someone completely before I even think about opening up.

I can imagine this is the case for a lot of people with mental illness and it’s important to understand that if you love someone who’s sick, it can take time to form that trust.

Finally, in my experience of having to relearn how to function in society after a major mental break, social interaction still remains to be one of the biggest challenges of my life.

I’m always hyper aware of things like eye contact, how I’m moving, what I look like to people and the way that I’m forming my words.

Sometimes I get so caught up in trying to portray natural human interaction that I either come off as fake or just get too distracted in how I’m acting to even keep up with the conversation.

I know the answer is to just relax and be myself but for a long time I was confused about who myself even was.

It’s for this reason that I’m pretty deeply introverted and choose to keep to myself most of the time.

I get most of my interaction online where it’s safe behind a screen to be the person that I wish I was in real life.

The point of all this is to illustrate how hard it can be to find love as a person with schizophrenia or other major mental illnesses.

If it’s not stigma, it’s trusting someone or even just interacting in general.

To my fellow sufferers, I know you and I see you and I want you to know that you’re not alone.

And to those who love people with mental illness, be kind, be soft and take the time to be there for your person.

I can guarantee that if you do, it will be one of the most fulfilling relationships of your life.

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.

Learning to Pull Back

Things in my life seem to take the characteristics of waves.

What happens is that, feeling stagnant, I’ll start to take on projects or set goals for myself in an attempt to break the nothing feeling, and, realizing it feels good to improve myself and get out of the funk, I’ll say yes to more things.

During this time I’ll get excited about potentialities, I’ll start dreaming of life with all these new facets that I’ve learned and new things that I can be proud of.

It’s a thrilling feeling so I’ll try to do more things until inevitably I’ll get to the point where my brain just blitzes out and I can’t handle the responsibilities I’ve taken on any more.

At that point I’m forced to quit what I was doing to regain a handle on myself and just chill the hell out.

Eventually, though, I’ll feel stagnant again and the cycle will repeat.

My mom has always said, in regards to my illness, “You know what you can handle.” And I do, but sometimes I forget that it’s all too easy to lose myself.

Because of this, the illness has been an exercise of learning to pull back. That is, learning to evaluate where I am with things and let things go if they’re too much, or if I find myself trying too hard.

This is an almost constant process, not only with projects that I take on but with things like being in public, talking to people, or even just spending too much time and trying to do too many things on the internet.

Most of the time I’ll lose sight of things for a week or two and frustrate myself until I realize that I need to take a step back.

I don’t necessarily think this is a problem stemming from my mental illness, as I can imagine many many other people do the same thing, but when you hit a wall with schizophrenia, it’s a total knockout and it can cause some scary stuff like paranoid delusions, depression, or even psychosis.

You have to be very careful with this stuff and it’s a delicate learning process. 16 years out and I still don’t have a firm grip on things, but I’m always getting better. Everyday is a new learning experience.

I think the point of all this is to say that it takes time to recognize the waves in your life.

I think everyone experiences some variation of what I’ve described and getting a handle on the way you do things is, seemingly, a part of growing up.

Life is a long series of learning experiences and we can choose how to act and how to react to the things we’re presented with.

We can choose to take action and we can choose to let things go, and learning when to do either of those things is a pretty intensive process.

It’s ok to get overwhelmed and it’s ok to feel stagnant but I think the goal is to create a life for yourself that is a healthy balance between too much and too little.

Just enough to keep you engaged, but not so much that you burn out.

Overall, I’m still learning, and I think that’s good enough. I’ll get there someday.

The Importance of a Strong Support Structure

I count myself extremely fortunate for the support of my family and friends. I feel blessed knowing that I’ve got this network of good people that can help me if and when a problem arises and I value that tremendously.

That said, there are a lot of people out there with mental illness who can’t count on a support network like I can.

It hurts my heart to know that people are struggling with both the illness, as well as the lack of help from any family or community structure. A strong support network is, in my opinion as important as the medicine I take for my illness, and without it I don’t know where I’d be, or what I’d be doing with myself.

In all honesty, I imagine I would be out on the street somewhere or, in the worst case, I may not have survived.

Knowing that you can count on people to help when the need arises provides a comfort and a security that to me, have been essential. This security gives you a space to recover in safety and to gain your footing in a place of love rather than a place of uncertainty.

I’m grateful that I’ve had that provided to me.

For some folks, their family is gone and so they no longer have the safety of a home network, for others, their family just doesn’t acknowledge or take the time to understand mental illness so again, these people have to find some way to fend for themselves. Still for others, they find themselves in communities that don’t have the essential and necessary means to deal with mental illness and the things that come along with it (homelessness, addiction).

It’s important that we provide support for these people in any way that we can.

Dealing with and recovering from mental illness has been one of the greatest struggles of my life and without the support that I have had, I doubt I would have survived these 16 years. Getting by without the support of my family would have been impossible. It’s for this reason that support on a familial and community level is, I believe, essential to recovery for the millions out there with major mental illness.

If I could introduce a bill or if I had the resources to create a place for that support I would pour every cent that I could into it. A safe community for people like me would make the difference between life and death for, I’m sure, a majority.

We may not have that level of support for everyone but for now, the best we can do is rely upon the services of organizations like NAMI to provide education for mental illness.

Families of those suffering need to, first, know they’re not alone, and second, try to educate themselves on the realities of mental illness in order to best support their loved ones.

If you are a caretaker of a person with mental illness, look into the family to family class offered by NAMI to familiarize yourself with the reality of caring for your loved ones with mental illness. There are other classes as well offered by different organizations but creating a support network for your loved ones is one of the most important things you can do after a diagnosis.

Also, realize that you are not alone in this experience and that millions of people and their families are going through the same thing.

All things considered, I wouldn’t be where I am now without the support of my family and my community.

Creating a strong support structure is and will be one of the most important things you can do for your loved one and if there’s any way for your to help, education is key. Learn everything you can about this diagnosis and what it means for both you and your loved one, it will provide guideposts that may not be apparent at first and it will create an understanding of the realities of what it’s like to live with mental illness.

Your love and support will make the difference to your loved one and it will show them that you’re there.

Again, you are not alone, your family is not alone and there are resources for you out there. You’ll get through this, I promise.

What Separates Paranoia and Anxiety?

If you suffer from paranoid delusions you’ve probably heard it time and time again that your paranoia is just social anxiety, and while there’s a function of anxiety in your delusions, paranoia seems to be a deeper, more sinister animal.

It used to bother me to no end when people would tell me my paranoia was social anxiety. I’ve had an innate fear of people since day one with my illness, and when people would say that, it felt like they were minimizing the intensity of what I felt and for that I became reactionary.

Mind you social anxiety is a huge problem for a lot of people and I don’t aim to lessen that, it’s just that paranoia is, at least I like to believe, kind of like a step above normal anxiety.

Paranoia is the delusion that the people around you are going to hurt you in some way while anxiety is just the worry that they won’t like you or that you’ll embarrass yourself.

It’s very easy to see how they can be confused with each other.

In my experience, paranoia is like walking around downtown and knowing that the people around you have motives purely to hurt you and to cause you harm in some way. because of that you have to remain hyperaware of your surroundings, you have to see and evaluate everyone and everything within eyeshot to determine whether it/they have the potential to mess with you, and you have to situate yourself in a safe space among this situation to keep tabs on them and any obstacles that may limit you from exiting.

Social anxiety on the other hand feels duller, more like just a worry that you’re not a part of the group and that you don’t fit in somehow.

I guess what I’m saying is that, for me at least, the difference between the two is the notion of imminent danger.

I fully acknowledge that other people might not see it this way and have an entirely different experience of the two as well.

I equate paranoia more with post traumatic stress disorder, in that you were hurt or irrevocably changed by a situation you found yourself in. One that, hence the name, caused a significant measure of trauma. I feel as though paranoia is a function of being on constant guard for that same or similar trauma.

What’s the point though? Why does this matter? Mainly, the healing for anxiety and the healing for trauma based disorders differs so it’s important to be cognizant of the things you are experiencing and feeling.

It’s important that you recognize what steps you need to take in order to handle the situation correctly, in a way that minimizes severity in order for you to push through until the time comes where you can leave the situation.

That said, social anxiety is a beast all it’s own and I applaud people who live and deal with that in their daily lives.

It takes an immense amount of strength to live with mental illness regardless of your diagnosis or the symptoms that you suffer with.

It’s important though to get the right treatment for your particular brand of crazy and with the help of a psychiatrist and a counselor, that treatment can be correctly determined.

No matter what you’re dealing with though, I want you to know that your experience is valid. You are important and you deserve to feel comfortable.

Regardless if it’s anxiety or paranoia, you’re allowed to be afraid and you’re allowed to get out. Your mental well being is and always will be the most important thing.