Living with Discomfort: My Journey with Mental Illness

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I have been sick for as long as I can remember. For a long time, I didn’t have the words to describe it. I didn’t grow up in a time where people spoke as openly about mental illness as they do now – and even now, we have a long way to go. What I did know was that as a kid I worried about everything. Everything. I couldn’t sleep at night because what was that noise, and what if there’s a fire, and who is under my bed? I’m so tired, and who’s in my room, and what was that noise?

I had my first hallucination when I was six years old. It was the middle of the night, when I saw a skeleton outside of my window, waving at me. It wasn’t threatening; just waving. I was awake, not dreaming.

When I was in my teens I started to self-harm. I also started to throw up, randomly, several times a month. No predictable reason or pattern, but always at night. I’d just be falling asleep and then be vomiting. Unpredictable misery. When I was in my early twenties, sleeping became so difficult that I went two full weeks without it. It broke my body. I couldn’t stop shaking. I couldn’t catch my breath and I couldn’t stop crying. It was Valentine’s Day when I broke out into hives and finally took myself to my doctor. I didn’t mention the self-harm or the hallucinations or the constant anxiety. I just told her that I was having an allergic reaction to something and oh, by the way, I couldn’t sleep. Then I started sobbing hysterically.

My doctor told me that my lack of sleep had caused unprecedented stress to my body. Therefore, my body started producing too many histamines. The take-away: I’d had an allergic reaction. To myself. In hindsight it’s funny, I guess. I walked away that day with a prescription for an antihistamine in case another allergic reaction occurred and a prescription for zopiclone – which I’d proceed to take nightly, increasing my dosage from 3mg to 5mg to 7.5mg a night over the next four years.  There was no talk of mental health, just some pills for the symptoms.

That was when I started to figure out that this wasn’t how ‘normal’ people existed.

Eventually, my shakes and anxiety attacks got out of control. With the zopiclone I was sleeping but I would wake up in the morning still exhausted as ever – groggy from the pills and not feeling any more rested. Some days – many days – I couldn’t get out of bed. That’s when I started skipping class, ended up on academic probation, and, finally, dropped out of university. I was so used to living this way that one day when I felt the telltale shakes of an anxiety attack coming on, I sat down in the middle of the sidewalk with my head between my legs. It took me a few seconds to realize that everyone else was feeling the shakes. This time there had been a minor earthquake. 

At 22, I moved to a new city. I didn’t have a family doctor there. I didn’t really have anything there, except the boy I followed to the city. I don’t really remember what the straw that broke the camel’s back was this time, but I do remember going to the walk-in clinic and crying because I felt like I was drowning in my inability to pull it together. To this day I am grateful to the young doctor who stayed calm and listened. She armed me with several therapists who were experienced in CBT, a prescription for sertraline, and a diagnosis of Generalized Anxiety Disorder and Depression. That visit was a turning point for me: the start of learning about my illness and learning coping skills.

I wholeheartedly believe that the sertraline saved my life. The process of going on it was horrible and when I forget to refill my prescription, the withdrawals are a nightmare. But it has provided me an iota of stability and that’s exactly what I needed.  The same therapist provided me with insight that I found helpful. The one I still fall back on today is to do things that cause you anxiety mindfully. I used to be unable to sleep because I’d get up and have to check if the front door was locked over and over and over again. She taught me to lock the door once – mindfully – and then live with the discomfort of uncertainty after that. She told me that the shaking and vomiting were physical manifestations of my mental anxiety. She taught me that, while it wasn’t encouraged, self-harm isn’t ‘crazy’; it makes sense. It causes a spike in adrenaline and helps boost the fight or flight response. It gave me comfort to know there was a method to the madness.

Although I continued to see her for a few months, the unfortunate reality was that she wasn’t a great match for me and I couldn’t afford her. I couldn’t – and to this day can’t always – afford my meds, much less a therapist.  What 20-something can afford over a hundred dollars an hour, weekly, just to be able to function at a barely normal level? What anxiety-ridden person can hold down a job and be a useful contributor to society without therapy?  What person can afford therapy without being able to hold down a job? It’s the catch-22 of a broken mental health care system.  

Things got worse again when I stopped taking the zopiclone. It was my decision, and not one I regret. It was messing with my short term memory. I quit it cold turkey after I woke up one morning and my partner – the boy I moved to the city with – kissed me and said, “That was amazing sex last night.” I blinked in shock because I didn’t remember having sex with him the previous night at all.  Stopping zopiclone meant I was back to not sleeping – arguably worse than before, because on top of my depression/anxiety/insomnia I was also dealing with withdrawal and a body that didn’t know how to shut itself off without the sedatives that I’d been on for four years. This caused a horrible cycle which led to me not sleeping and breaking out into hives. Having anxiety caused by lack of sleep, led me to drinking too much in order to feel like I could lead a normal life. It also meant the resurgence of my nighttime hallucinations – mostly auditory but occasionally visual.

Eventually, I realized I needed help coping and found a group MB-CBT class and registered. I went to two out of the six classes. At the second session, I asked one of the class leaders, “I hear things at night – footsteps, or the sound of my door unlocking. They’re not real but I’m definitely awake. What is this?”

She, and I’ve never forgiven her for this, said, “I don’t know, but that doesn’t sound normal.” People like that should not work in healthcare.

Now, I’d be able to shrug her off as ignorant, but then, I decided that I might be psychotic or schizophrenic or who knows what. I messaged an ex, who happens to be a doctor, and she talked me down, explaining that it was common and has a name: hypnopompic and hypnagogic hallucinations.  I also went to my doctor, who told me, “If you know it isn’t real, it is still scary and a hallucination, but it isn’t psychosis. If it were, you wouldn’t be aware it wasn’t real.” Small comforts.

Six years after moving to the city with the boy, I left it and him behind. I was cutting myself more and worse than ever, drinking more than ever, and having full blown meltdowns near-nightly. With less than two months notice, I moved with my dog across the country to somewhere sunny, small, and quiet.  I settled in. I found a new doctor. I slowly found my stability. I felt empowered to be able to explain my medical history with vocabulary like ‘anxiety’, ‘depression’, ‘manic’ and ‘parasomnia’, as well as skills I’d picked up over the last decade, a reality that seemed impossible when I first had symptoms as a young child. I was able to tell him with pride and honesty that I hadn’t hurt myself in almost a year. I got on anti-psychotics.  And that’s when I got a new label: borderline personality disorder with co-morbid anxiety and depression. I didn’t take it terribly well. I didn’t know much about borderline, except that my brain jumped to Girl, Interrupted and a woman I dated briefly who was diagnosed BPD and explained it as ‘the crazy one’. I had come to terms with Generalized Anxiety and Depression, but now I had ‘the crazy one’.

The doctor told me that if I used words like ‘manic’ and had hallucinations, “the writing is on the wall.” Cognitively I was able to recognize that I was the same person I’ve always been, I just have a new more accurate descriptor. But I couldn’t shake the feeling that officially, I had ‘the crazy one’. I ran it by Dr. Ex, and she confirmed that it fit what she knew of me. I consulted Dr. Google, and everything I read fit. I had mixed feelings about it. The comfort of having a label that felt ‘right’ was nice, but borderline sometimes feels like a word that undermines the things I like most about myself. Am I brave or just reckless? Fearless or just impulsive? Sensitive or just weak? Empathetic and compassionate, or just irrational? Loving or just lonely? Patient or just terrified of being alone? The uncertainty of not knowing which parts of me are me and which parts of me are my illness is the discomfort I’m learning to live with to this day.