“I’m terrified of making a mistake, even when there would be no repercussions.”

My symptoms of OCPD include fixations on lists, organization and schedules and other methods of controlling my environment. In my head, there’s only one way to do things, and it throws me off when people suggest doing things differently to the point where I will have a breakdown. I have a lot of trouble getting rid of things, even if they aren’t worth anything because I feel like I might need them or like I’ll lose something by giving them up.

I’m also a workaholic for no reason and have an extremely difficult time delegating tasks because I don’t want to put anyone in a bad position, but I also don’t want them messing stuff up. But the most impactful is a damaging level of perfectionism where I set my standards for myself at unachievable heights, but force myself to chase them anyway, knowing I will fail, and then beat myself up when I inevitably fail to reach them.

They started sometime early in college, about a year or so after my schizoaffective disorder diagnosis.

My symptoms weave their way into everything I do. At work and at home, I struggle to get anything done because it’s hard to start or finish projects because I’m so terrified of doing them imperfectly. I work late even when there is no reason to do so. I often end up overloaded on tasks because I don’t trust other people to do them or don’t want to bother anyone with them. I repeat things like measuring stuff or checking things over and over again because I’m terrified of making a mistake, even when there would be no repercussions.

For example, one of my tasks at work is to mail packages and documents and I will literally weigh a package three or four times even though I always write it down the first time because, even if it is not time sensitive at all, I fear that if the package is returned because I didn’t put sufficient postage for the weight of it, that it’s going to seriously screw over the law firm I work for and/or my career there.

And living in a world where you must be unachievably perfect, all the while knowing you never could be is exhausting. Logically, I know that my mindset and behaviours rarely make sense. But I still struggle to change them.

My schizoaffective disorder and my OCPD interact in a few ways. Schizoaffective disorder can make social situations really rocky for me and between the anxiety and any tripping over words or misreading tone, emotion, and intention all qualify as extremely imperfect to my OCPD, which often leads to silent internal breakdowns (and sometimes not-enitrely-internal ones). And then the stress from my OCPD can trigger hallucinations and disorganized thoughts.

I also fall into magical thinking sometimes from the schizoaffective, which feeds the OCPD, like I’ll think if I can do this one thing perfectly, all my problems will be solved. But when I fail to meet my standards in these situations, the self-deprecation hits even harder.

My psychiatrist and I are pretty sure the onset of the schizoaffective disorder played a role in the formation of my OCPD too. They do operate independently as well though.

The path to my diagnosis was a bit like a revelation. One day, mid-session, my psychiatrist off-handedly mentioned what I was talking about when it came to rigidity and perfectionism sounded like OCPD. My background is in psychology and research, but, admittedly, I knew very little about personality disorders, so I went and looked OCPD up and it was like reading a synopsis of how my brain has functioned over the last ten or so years.

At my next session with my psychiatrist, I brought it up and explained my experiences and asked if she thought they fit with what the DSM criteria were. Some of the experiences and thought processes I shared were ones she had never even heard from me before because I didn’t realize those thought processes weren’t normal. I just thought I didn’t handle life as well as other people did and that I couldn’t change the behaviours and stuff I that were distressing because I wasn’t strong enough. My doctor confirmed that it sounded just like OCPD.

My mental health conditions have impacted my relationships in multiple ways. Because of my rigidity/stubbornness and need to be in control thanks to the OCPD, I lost a lot of friends in college. People don’t really like it when you tell them they’re doing things wrong but they’re not.

I was that girl who had to be right. Who would take over projects. Who would correct your pronunciation. Who needed things to be her way. And who was wildly uncomfortable when things weren’t done the way she thought they were supposed to be. I’m pretty sure my college boyfriend’s family hated me for it.

The OCPD has really tried my romantic relationships as well. It was really hard for my boyfriend at first because I struggled to understand why he would do things differently than I would. The need for control has been hard on him too because I had a very hard time changing plans or being spontaneous. It’s also been very hard for me because many people don’t take my OCPD symptoms seriously.

The schizoaffective disorder has tried my relationships in other ways, and I think it’s much easier for people to feel empathy for that than the OCPD. Schizoaffective disorder can make me awkward, anxious, and weird, but at least it doesn’t make me unlikeable.

Having an existing family history of mental illness also made my diagnosis really scary for my mom – my uncle has schizophrenia, but he has not had a successful outcome, though we are pretty sure he was abused while in the state hospital system where they grew up in New York. None of us even knew a positive outcome was possible, honestly.

I have found that there are some people who don’t really want to be around me anymore, but I have found others, both with and without similar conditions, who I have been able to build even stronger relationships with, though it can take me some time to feel safe opening up in person even though I’m completely open online and in any advocacy space. 

I know my parents struggled with denial and feeling lost and not knowing what to do. Things have gotten better now that I’m better able to voice my experiences and needs, but I felt very alienated from everyone for a long time and I think that made things harder on my friends and family.

My boyfriend had to get used to that feeling of not really understanding what was happening symptom-wise, but he made an effort to learn more about schizoaffective disorder and it made a huge difference. He is still a little thrown sometimes when I ask him if he sees or hears something, for the most part he’s gotten used to it, but he still doesn’t always know how to help, but I feel like that’s understandable.

In school, the OCPD was helpful to a point. Never reaching my standards was hard and, not surprisingly, my accomplishments despite my schizoaffective disorder were still not satisfactory. At work, it can be an asset, but it also makes it hard because the anxiety around making any kind of mistake is so intense and my mind will tell me I’m doing things correctly when I am completely off from the actual procedure.

Schizoaffective disorder made college an immense challenge. The cognitive issues hit me like a slap across the face after years of being considered ‘gifted’ and easily collecting top grades and awards. It was hard too because I felt like I didn’t deserve help and also that I didn’t want it because I so badly wanted to pretend it wasn’t real.

At work, it’s hard in some industries more than others. I worked in schizophrenia research for a few years, and that was great because I could be open and everyone understood and was supportive. In my current job, most people know and they are also incredibly supportive, and I am so thankful for that because they have been so open to accommodating my needs.

In the past though, I’ve worked in retail, bartending/serving, and finance, and it was much more difficult for me to be open in those settings because I was so afraid of losing my job to the stigma. I felt like I was walking on eggshells a lot of the time, particularly when I was experiencing symptoms.

One major problem I’m having when it comes to getting a handle on the OCPD is that it can be encouraged in some situations. I work in a law office, and, when doing things like proofreading or preparing documents, perfection is a must. I often catch errors that others don’t, and my bosses are extremely grateful, which just feeds the OCPD. So it does come in handy in some cases, but the praise for it doesn’t help my recovery.

I am not one of those people who think that my schizoaffective disorder is a gift or a super power. It is hell. But I cannot deny that it has had some positive effects. It has introduced me to people and experiences I never would have otherwise had, including finding purpose in advocacy. It also does offer me a perspective that many others will never see and I try to use my ability to voice my perspective as a tool to further advocacy for those with serious mental illnesses. I have always been an empathic person, but schizoaffective disorder has grown my empathy for others even further.

I was diagnosed at 17 and felt so incredibly different and alone. Now, 14 years later, there are still times that I feel like that, but finding others living with it has made a huge difference.

It was literally four years into my diagnosis before I met anyone else with schizoaffective disorder, but in the last couple years, I started my blog about my experiences and ventured into the mental health advocacy side of social media and found so many others, particularly on Instagram. In June I even got to meet a few others in person when I spoke on a panel with the nonprofit Students With Psychosis at a first episode psychosis conference in Texas. I don’t think I’ve ever felt like I fit in more than those few days.

Advocacy has been super helpful for me. It’s been a great way to meet people with similar or the same diagnosis, but it’s also been really helpful with helping me accept myself with schizoaffective disorder and take all of the negative things I’ve been through and turn them into something positive.

Most of my symptoms are fairly well managed by my medication, but I also do therapy ranging from once a week to three times a week. I also am lucky to have a very supportive family, boyfriend, and friends. For support, I mostly turn to my boyfriend, but we also live several states away from my close friends who I turned to in high school. My dog was also my service dog for a few years. He’s retired now, but I still turn to him for emotional support.

He could check a room for me if I thought I saw something in it. He was great for grounding me and could also take me home if we were out for a walk or to an exit, my car, or my boyfriend if we were out and about and I got too disorganized or dissociated or had a panic attack and needed to get somewhere I felt safe. He could do deep pressure therapy too, which was really helpful when my thoughts were highly disorganized. And he was helpful for figuring out if something was real or not because I could tell him to go interact with whatever I was seeing and if he had no idea what I wanted him to do, I knew it wasn’t real.

The biggest misconception I run across with OCPD is that it’s all just normal feelings and behaviours. Yes, there are people who are perfectionists and who like order and lists, but that’s not OCPD. My symptoms are my highly distressing maladaptive attempts to control my world. This kind of perfectionism is a living hell. I can’t just lower my standards. I can’t just accept that nobody is perfect. Not until I find healthier ways to either feel in control or be okay not having control at all times. I can’t just walk away from this easily, but that also doesn’t mean I’m not going to do everything I can to live a better life.

With schizoaffective disorder, so many people assume those of us living with it must be either dangerous or geniuses, and that’s just completely wrong. I have also run into so many people who had no idea that someone living with a schizophrenia spectrum disorder can do things like go to college or live independently or have a job or fulfilling life in general.

The truth is that, in today’s society and with where we’re at with available treatments and their accessibility, a fulfilling life isn’t possible for everyone with schizophrenia spectrum disorders, but it can be. But one important step is for people to recognize that we are still human and we are just as important as anyone else. If people can better understand our experiences and shed the fear, it could open so many doors for more positive outcomes.

As for me, I just hope people are willing to listen to what I have to say. I can’t speak for everyone who lives with these illnesses, but I can use my own experiences and my platform to bring attention to their stories and voices as well.