EPISODE 11 TRANSCRIPT
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So today’s video topic is interesting. I’m going to be talking about misdiagnosis. What’s interesting about that is that although I know it’s common, there isn’t a lot of information about it online. Now the evidence that is available is admittedly anecdotal, and I usually don’t go for the anecdotal evidence too much. The reason I’m willing to make an exception to one of my rules is that my conclusion also follows logic and I’ll get into that in a minute. Keep in mind that I’m going to be only talking about one type of misdiagnosis today. I’m going to be referring to people that have OCPD that seek out professional help at some point in their life and are misdiagnosed specifically with OCD.
The reason I feel that it’s logical to assume that this is common is threefold. First, I’ve had the experience of talking to others around the world that have had this experience. People have shared that it was thought that they had OCD when they were younger. Second, outwardly, as mentioned in my last video, there are many similar symptoms. Without diving too deep it would not be a stretch to think someone with OCPD has OCD. Finally, nobody wants to talk, so it makes sense it would be hard to find information on it. Very few people ever get help to begin with and there can be a shame surrounding OCPD. So you aren’t going to find many people with it talking about their experiences. On the professional side, well what sort of a doctor is going to want to publish an article on being wrong all the time. Not any sort of doctor I’ve ever met.
Now in other videos I mention what amounts to outrunning my past. I’ve had plenty of fantastic moments, but I’ve also had a lot of not so fantastic moments. So because of the bad times, and even sort of because of the good times, I find it painful to reminisce or spend any amount of time thinking about the past. Don’t get me wrong, I want to be able to, but it usually causes me more pain than it’s worth. The point of what I’m saying is that when I create videos such as this and I talk about my past, I can struggle to remember the moments exactly how they happened, especially with instances I didn’t think important at the time. It’s not Alzheimer’s. Not yet anyways. I’m just not my own number one fan. And if I didn’t bother to remember it, well obviously nobody else would have either.
Look, you wouldn’t believe the amount of time I waste trying to decide how much of how I put these videos together and the thought processes behind them I should share. The OCPD causes me to obsess over the smallest details and take completely unnecessary steps in proving how truthful I’m being. So the long and short of it is that a lot of details are fuzzy, but the tone, general story and intent behind everything I say is truthful. So if you can accept that, let’s continue on with this subject of misdiagnosis.
Let’s break this subject into two topics. First, let’s address when and how a misdiagnosis might occur. After that, let’s talk about the implications of a misdiagnosis. When I was a child I developed what are known as rituals. I’ve talked about these in other videos. These rituals included such things as being overly neat, washing my hands way too frequently, not trusting my memory to the point where I checked things over and over, and organizing and re-organizing my belongings for what I perceived as optimizing my life. Heavy things for a young child to be obsessed with. In general, it’s common for these types of rituals to lead to varying levels of isolation. Personally, I was able to make room for one or two friends, but that doesn’t mean I still didn’t feel like a freak and that doesn’t mean that I didn’t suffer the ill effects of constantly trying to hide as many symptoms from people as possible. Eventually for anyone suffering with any mental illness that is trying to mask their symptoms from loved ones, the dam breaks. So with me, as my childhood years went by I developed more and more symptoms or habits or whatever you’d like to call them, and these rituals are a catch 22.
Let’s use a specific example. This is a real life example of mine, but I’m guessing a little bit as to the exact thoughts that would have gone through my head all the way back then. I used to have a desk in my room for homework. On the desk were normal things like paper, pens, pencils, books & paperclips. I liked everything to be at a right angle and in a specific place. I felt like keeping order was the right thing to do. Constantly keeping that order was time consuming and lead to procrastination. Now the act of straightening or organizing brought some relief to my overactive brain. It felt good inside my head when everything was “right”. But, the time it took to do this and many other similar things, meant that the things I really should be doing were not getting done. By not doing homework in time for example, I would create so much more stress for myself. In order to cope I would make up another rule for myself that would comfort me upon completing it. Now although I knew completing a self assigned task would bring me comfort, and that not doing something I should be doing, such as homework, would bring me stress, I had no way of knowing at such a young age why I was doing these things. And as the mind of someone with OCPD convinces the sufferer that they are right about everything and that everyone else is wrong, you don’t make any attempts to change your behavior.
Now I’ve described something that seemingly contradicts itself. On the one hand, I’m trying to hide my symptoms because I know I will be regarded as strange and I fear being ostracised. On the other hand I’m not willing to change because I feel I’m in the right. The reason that these seemingly opposite trains of thought can coexist, is that even though we believe ourselves to be right in all of the ways we differ from everyone around us, we still know the importance of appearing to fit in. Especially at a young age. This becomes the crux of how we allow ourselves to continue so far down this path later on in life. As a kid, well, you may be the square peg in the round hole, but you take on the brunt of what that means. As an adult, you’ve allowed these rules to go on for so long that you become bound to them, and as such you inflict them on anyone that you enter into a relationship with, be it personal or professional.
Now, why did I explain all of that in an episode about misdiagnosis? Well, it’s important to realize how these rituals, that outwardly mirror some of those of OCD, come about. If my only OCPD behavior was the organizing my desk thing I talked about, not only would it have been easy to hide, but even if I had been unable to hide it, it’s incredibly unlikely that someone would have noticed it as odd behavior. It’s this constant battle of needing a self imposed rule to create some sort of comfort or relief in a seemingly chaotic universe, that leads to failure. It’s the failure that leads to needing new rules. And so the list grows and grows until you’re unable to hide the depression that results and you’re unable to hide the multitude of rituals. At this point, it becomes increasingly likely that you may be taken to a therapist. I’m well aware that many people come from homes where the parents didn’t care enough to seek out help for their child or maybe the parents couldn’t afford the treatment that the child or teenager needed. And it should be noted that although my misdiagnosis came when I was young, for many, they seek out help by themselves well into their adult years and they can be misdiagnosed just as easily at this time as well.
Being forced into seeing a psychiatrist at a young age has its own host of problems. And as is my favorite thing to say, I’ll save what that is specifically like for another video. I do remember a few things from this time that are pertinent. I remember the doctor doing much of the talking. I remember him asking about my routines more than my feelings. Most importantly, I remember not wanting to be upfront or truthful about most of what I was asked. OCPD is incredibly complicated and it’s now twenty five or more years later and not much more is known about it now. However, OCD is more common. OCD has a lot of outward symptoms that seem easily attributed to OCD. And in order to diagnose OCDP, you need to dig much deeper.
So here are a few things to keep in mind for parents with children with symptoms and for adults seeking treatment for these types of symptoms for the first time. Firstly, and this should be an obvious one, there are good and bad psychiatrists and therapists out there. My experience as a child was a bit 50/50. I wasn’t very cooperative, so it was hard for him to pull out information from me. But my parents had talked about my behavior with him ahead of time, and I think out of some level of laziness he was ready to throw down an OCD diagnosis before we even talked. If you suspect OCPD as a parent, you’re going to need to discuss not only the behaviors of your child but the thought processes behind them. As an adult seeking treatment, the same applies. Make sure you’re telling the doctor that you feel that your routines are the right thing to do. If you go in with a list of rituals, routines and behaviors that mirror OCD and you’re not willing to talk about your feelings about those behaviors, you’re making it easy for a less than stellar doctor to misdiagnose you. Now that still wouldn’t be your fault, but it’s best to open up as much as possible with your health care provider so that they have all of the information they need when coming up with a treatment plan.
Second, and this goes along with the first, you should not be afraid to seek out a second opinion. In fact, there are many good reasons to do this. At any age, it can be incredibly difficult to accept a diagnosis of a mental disorder. People with OCPD specifically are very, very resistant to accepting a diagnosis. Also, on a regular basis, people meet with very well qualified professionals, but the personalities of the patient and doctor are not a good fit. This can make the treatment unnecessarily hard. Something else that can make a diagnosis hard to swallow is your own preconceived notions. I’ve seen people in online groups describe a completely different disorder and yet they’re convinced they have OCPD. Many of these people will claim to have been diagnosed with OCD or maybe something like PTSD, and yet they cling to the idea that they have something that they most definitely do not. And obviously to tie it all in to the theme of this video, you may have been given a misdiagnosis.
For the last tip you need not look any further than me. As I went about half of my life with a misdiagnosis and as I’ve talked with many people online that had the misfortune of a misdiagnosis, we can attest to the damage caused. So this advice is specifically for the parents of someone with OCPD. Treatment can be long, or alternately it can take a long time just to find a treatment that has some level of effectiveness. The severity of the symptoms can go up and down depending on the level of stress or depression the sufferer is experiencing. For me as a young boy, I didn’t like talking about my feelings with anyone. I felt so awkward and uncomfortable and anxious that I did anything and everything to mask my symptoms once I realized that if I kept acting weird, I’d have to keep going to therapy and talking about my private thoughts. What this means is that as parents, you must be incredibly diligent with the disorder. The reason I lived with a misdiagnosis half of my life is because I managed to trick my mum and dad into thinking I was actually totally fine. Once they were convinced, I didn’t have to keep taking medication and talking about my feelings. I got worse and worse each year, but better and better at hiding it. And so I entered into adulthood with the shame of a disorder I never really had.
I think I’ve gone on long enough for this episode, so I’m going to put together a whole new video addressing how an incorrect diagnosis impacted me as an adult and whether or not the damage is lasting. I’ve sort of bounced around in this video a bunch so let me recap and sum everything up. OCPD and OCD are two very different disorders, but outwardly they can manifest as similar rituals or routines. If we are talking about a young person being offered treatment and diagnosis of these symptoms, as they are unlikely to understand most of what is going on in their head, it becomes increasingly likely that they will not be able to express how they feel effectively, and therefore increasing the odds of a misdiagnosis. If you are an adult seeking help, please keep in mind that there are some doctors out there that may not be as professional as others. Or…not so sinisterly, they may just not have any experience diagnosing OCPD. Finally, the dangers of misdiagnosis are ineffective treatment methods, incorrect medications, increased anxiety & depression and in extreme situations…well I don’t want to leave the video on that note. But you get the point. The lesson here is that things are not always as they seem and nothing is as important as your health. So please look after yourselves.