May is mental health awareness month. It isn’t getting much visibility, at least where I live or the online places I frequent, but its still nice that discussions about mental illness are happening outside of some horrible event like a school shooting. So to add to the discussion I thought I’d share my own personal struggle with mental illness.
My struggles with mental illness began when I was in high school. It was my senior year and depression started to creep in. I isolated myself, lashed out at those closest to me, my school and work performance started to suffer, it was a bad time. I rarely slept and felt like a wet blanket was always draped around me. This culminated in a unsuccessful suicide attempt I kept to myself.
It wasn’t until I was in college that I received a diagnosis. My illness flew beneath the radar of my friends and family. I was not even fully aware there was a problem until someone confronted me about it, it was my normal.
The thing about mental illness is that it can change your perception. So you may not realize you are suffering from one until someone else sees it, it colors your reality. As Andrew Solomon puts it in his TED talk on depression, “instead of realizing you are seeing the world through a bad mood, you think you are seeing truly.” That’s how it was for me anyway.
I had been living with anger, anxiety, and unexplainable emotional pain for so long that I did not realize it was odd. Not only that but in the moments when I thought something had to be done about it, I thought sheer willpower could overcome it. I took personal responsibility for it as if I had caused it. It wasn’t until an advisor at the college I attended and her assistant, both of whom I had known since high school, ambushed me that I was made aware that there had been a change in me and it was perceptible.
They requested a meeting with me at the end of my fall semester sophomore year, which didn’t seem that odd to me, I thought they wanted to discuss spring semester classes. The meeting basically consisted of them telling me I lost my “change the world” energy, I didn’t seem to be taking care of myself and they, and some others, were worried about me. I broke down pretty much instantly. Hearing something I knew deep down inside that I hadn’t acknowledged, having someone else see my pain, was kind of a relief. The meeting ended with me agreeing to see a therapist.
After seeing a therapist for awhile I was referred to a psychiatrist. The psychiatrist diagnosed me with depression and social anxiety. My depression was so insidious I didn’t fully believe I actually had it. Those diagnoses allowed me to get extensions on schoolwork and saved me from failing a semester so I thought I had beat the system. I started an antidepressant and things did get nominally better for awhile.
During this period of my life my emotions were extremely off kilter. Sometimes I wouldn’t sleep for days at a time. Lashing out at others wasn’t uncommon for me but neither was confessing affection. I went where my emotions took me for good or for bad with little awareness of the shifting states(partly why I didn’t fully recognize the reality of my depression at the time). At times I felt high but mostly low. Sometimes I would self isolate but at other times I would call everyone in my contacts.
My illness took a toll on me academically, interpersonally, and vocationally.
That instability was my life for the rest of my collegiate career. Even with an antidepressant things did not improve much. I self medicated with beer and weed to cope with my feelings which often times made things worse. But I was supposed to be getting better, right? So I put on an act for those who were concerned about me and started to hide parts of myself in different people. It felt like I was living several lives. I was moderately successful at pretending, but my junior year things started to get worse.
Following the spring semester of my junior year a friend of mine agreed to let me sublease his apartment for the summer. I was working as a dishwasher at a bistro and life was quiet but I started to think customers were talking about me. I would ask my coworkers if they heard anything and sometimes I would tell them customers were definitely saying bad things about me. This had been happening all throughout the spring semester but worsened in the summer.
I was starting to experience intense paranoia. It seemed that everywhere I went people were talking about me. Whether I was out for a bike ride, walking across campus, or relaxing at the apartment, nowhere was safe. Even when I was with people it happened.
Around this time I was also heavily into self help books and spirituality. I had intense spiritual experiences which affected me so deeply I changed my life’s course. There were moments where I felt so connected to a universal love it brought me to tears, it was very euphoric. Anyway, I decided I was going to take a year off college and pursue other things. So at the end of the summer I moved back home.
When I got home things changed again. I told my family about my depression and the medication I was taking both of which I had been hiding from them. I dumped my antidepressants down the toilet and things went back to normal for awhile. The paranoia was gone and I felt like I was back to normal.
Things were relatively uneventful for awhile. Well as uneventful as life can be for a college drop out. I was kicked out by my family and relied on my friends for support for awhile. I was still self medicating with alcohol and drugs. But I eventually found my footing and life was good for awhile.
Not long after I moved into my first apartment I started to struggle again. Along with my depression, the paranoia was making a comeback, I started to have panic attacks, and I was hearing things no one else could. This went on for months.
I was still functioning, still going to work, paying my bills, seeing friends, somehow I was still functioning normally. Sometimes I would have delusions but I did not voice them so people were unaware. This all came to a head one night when I started having persecutory delusions and full blown psychosis.
After a particularly challenging night, I begged a good friend to take me to a behavioral hospital but she felt like that was something my family should handle so she took me to my mothers house. I told my mom some of what was going on and my delusions and asked her to also take me to a mental hospital but she refused, we went to an ER instead.
When I got there they asked me everything I had been taking and drug tested me. I spoke to their resident therapist and begged him to go to a mental hospital. His response, “if everything comes back clean.” That was my first taste of how people with mental illnesses are treated. I was begging for help and they weren’t giving it to me.
The voices I was hearing were relentlessly tormenting me and feeding my persecutory delusions as I laid in an ER bed waiting for the drug test to come back. My blood pressure was off the charts. Eventually the therapist came back with my results. I asked to see them, he gave them to me and left without explaining anything.
After some time an ambulance arrived and I was taken to a mental hospital. When I arrived at the intake office I filled out some paperwork and committed myself. The doctor gave me some medication and gave me some time with my family before I went in.
My brother arrived during this time. He talked me down a bit, helped me relax, and I started to get drowsy as the medication started to work. The three of us had a group hug and I was taken onto a unit.
My time in the hospital is kind of fuzzy. It was weird, we all knew we were there for mental health reasons but it was never a topic of conversation. I spent most of my free time playing scrabble with a guy who was an aspiring writer and a walking dictionary.
For a week I was treated at the hospital. The doctors didn’t really communicate to me what they thought was going on. They just prescribed me medication, too much medication, and I just took it with the mindset that they wouldn’t prescribe something unless they thought it would help and I was desperate for relief. I met with a psychiatrist once a day for five minutes and that was the extent of my contact with doctors.
At the end of the week a doctor approached me to try to convince me to stay a couple of more days, they wanted to milk my insurance for all it was worth. I vehemently refused. Although the structure and routine was of the hospital was peaceful, I wanted my freedom back. So I met with a social worker who went over my recovery plans and told me outpatient care had already been arranged for me. I still had no clue what exactly I was dealing with.
The day I was released my brother picked me up. I didn’t feel comfortable being alone yet so I stayed with my mom for a few days. When I first arrived it felt like I was being debriefed. My mom asked me what I remembered and I pretended that it was all a blur to hear her version of events and to save face.
At this point no one had discussed my mental health with me. I didn’t know what the doctors or my family thought was going on with me. However, when I was discharged from the hospital I was given a folder with some papers; thinking I could find answers there, I opened it. I leafed through the paperwork until I came across a page with a diagnosis.
Schizophrenia was what I was being diagnosed with. I think I was in shock because initially I had no reaction to my diagnosis. I hopped on the computer and googled the medication I was taking along with the symptoms of schizophrenia but I didn’t really feel affected by this turn of events.
I went back to my place about two days later and that’s when it all came crashing down on me. I cried for hours and thought about how I would never have a normal life. Suicide seemed like a good idea. I tried to lean on my family for support but they were in denial.
After realizing I had to keep living life, I informed my boss I would be returning to work. When I showed up for work my coworkers asked me what had happened. “I was sick,” wasn’t enough for them because it was out of character for me to take off a day, let alone a week. Whether it was out of genuine concern or nosiness they knew something serious had happened and wanted to know what it was. I couldn’t tell them I had mental health issues with the stigma attached to it, so I made up some story about having a heart problem. Getting back to my routine was comforting but the questions made me uncomfortable.
That was when I first started to shut people out. No more shooting the breeze with my coworkers I couldn’t let anything slip. Same thing for most of my friends. I stopped calling some people and ignored calls for almost a year. But I had successfully covered up what had happened, no one I didn’t want to know knew.
There was one friend who I let know right away. She was my rock during this period. I would vent to her about how scared and confused I was along with how frustrated I was with my family. She took a realistic approach to what was going on when I discussed my mental health with her which was exactly what I needed during that time. I could discuss the implications of what was happening without some needless positive nonsense. She was in grad school and working at an internship but still found time to stop by my apartment several times a week, if it wasn’t for her I don’t know how I would have coped.
A month after I was released from the hospital, I had my first appointment with the psychiatrist my family had arranged for me to see while I was in the hospital. After talking to him for awhile he told me he did not agree with the diagnosis of schizophrenia. He thought I was schizoaffective instead. Schizoaffective disorder is a chronic condition in which the sufferer experiences symptoms of schizophrenia and a mood disorder. The mood element is either depression or manic depression. He prescribed me an antipsychotic and antidepressant and sent me on my way.
The months following this were really hard. The medication made me extremely drowsy and foggy, my family was still in denial, I was still trying to understand the implications of my diagnosis as well as cope with my symptoms. I was dealing with all that and trying to keep my life together when I so badly wanted to fall apart. I felt broken but wasn’t allowed to be broken, I had bills and responsibilities. I had very little support. Along with all that I had to suffer largely in silence. I couldn’t share my struggles with this illness with the world because its just not something its safe to discuss with everybody.
After being medicated for awhile my symptoms started to go away. One day I riding the bus on a nice spring day and I realized I wasn’t anxious or worried. People were having conversations and I didn’t think they were about me. I wasn’t hyper aware of my surroundings, I was just enjoying my commute. There was no paranoia, no social anxiety, and no hallucinations. That was the day I finally accepted that maybe the doctors were right.
This moment of peace and clarity came months after I started treatment. I didn’t realize how severe my symptoms were until they were gone. It was like I woke up to a new reality, I felt normal. I felt like I finally understood what it’s like to live life without a mental illness.
That however was not good enough for me. The next couple of years I would go on and off my medication periodically. Why? Well the side effects of these drugs are terrible. But when the symptoms would inevitably return, I would go back on medication. Eventually I reached a point where I realized my symptoms are worse than the side effects, so I don’t go off them randomly anymore. Thankfully none of my episodes affected my life too badly.
My depression and emotional turmoil is something I battle even with medication. But I have learned to navigate the waves instead of being controlled by them. The depression leaves me at times but it always finds its way home.
There were times when I did everything right and my symptoms still returned. Psychiatry for the most part is a lot of trial and error. So sometimes you have to keep trying different medications until you find one that works. So there were periods where I took my medication as directed and still experienced symptoms. That is a really disheartening experience.
I have had to come out several times in my life. The first time was admitting I was gay. The second time I came out as atheist. And now, well, now I’m coming out as someone who lives with a serious mental illness.
Thankfully I’m surrounded by wonderful human beings who were nothing but accepting when I told them of my illness. The understanding took awhile sometimes but I have never been treated differently by anyone I consider close to me.
I do still see and experience stigma in my day to day life just like causal racism or homophobia, its casual stigma. The things people say to total strangers, to me, about their friends and family battling mental illness are horrid. I’ve even had my own family members make comments about others living with mental illness; they may amend it and say “not like you” but it still sucks. And sometimes I want to self disclose to take these people down a notch but I’m not there yet.
Those instances stick with me though and are a constant reminder to me that we still have work to do as a society. We talk about racism, sexism, homophobia, transphobia, xenophobia, etc. But I rarely hear anyone stand up for those living with and suffering from mental illness.
People with mental illness have a tendency to withdraw from society often because society withdraws from them. People face discrimination in all areas of their lives because of something they cannot control. We need to have a frank discussion about mental illness.
We need to move to a society that, instead of gossiping about the “crazy” person, we recognize they need our help and compassion. Instead of being expected to suffer in silence we need to let people know we support them in their struggles and admire their fight to stay healthy. We need to replace derision with love.
Today, I’m still living life and I am coping ok. In some ways I’m lucky because I’m “high functioning.” I have a great support system and treatment team. Schizoaffective has tried to take my life from me but it hasn’t won. I battle it every waking moment and I probably will have to for the rest of my life.