The Dissociative Runner

Blog linked to the Distance into Donations Fundraising Initiatives. Furthering the initiative by raising awareness about local charities, the disabled community and Dissociative Identity Disorder. @thedissociativerunner

[thedissociativerunner]

[thedissociativerunner]

Etiquette and proper discourse

A friend of ours asked about proper etiquette regarding D.I.D. systems. I think this is a really good question. First off, I'd like to say that simply asking this question is a great indicator of respect for someone else's experience. I always try to do my best to understand where someone else is coming from, especially when reading about an experience I am not a part of.

I am still not entirely certain of the language of things when it comes to Dissociative Disorders. I actually find it quite overwhelming - especially when you start dividing things into Otherwise Specified or not-otherwise specified Disorders. (Not sure what that's referring to? Well, yeah, we struggle with it too). So that being said, the first thing I'm going to share is actually a couple other resources that has been helpful to me. As I read through these resources, there was something that stood out for me in particular. A lot of what someone with D.I.D. is comfortable with has to do with where they are at as a system. It also gets even more complicated when some parts are comfortable with certain etiquette and others are not. Yeah. It's kinda like when people say you can't please everyone. So true here. That can make things really difficult, not just for the person who identifies as a D.I.D. System, but also for the people who are trying really hard to be respectful and accepting of their status. So, I'll touch on that in regards to my current personal experience as well in this post.

First, here are the resources I mentioned:

More than One - Etiquette This is a great resource in general. It is succinct and not too complex. It has several different outside links to additional resources told from the perspective of other systems.

Rules of Engagement - Plural Etiquette : this is more of a resource that is specific to the system and system members writing it. But it still gives a good perspective of what boundaries their system has put in place for proper discourse, etiquette and interaction.

I suggest taking a good read through these two links.

So, now let's take it from our angle:

We've had the official diagnosis of D.I.D. for a little over a year ago (I think? Time is weird - maybe it was two years ago). We go to therapy twice a week. It's a lot of really hard and complicated work. Prior to our official diagnosis, we had a lot of wrong ones that were given to us. I guess maybe they aren't exactly wrong - I think some of those diagnosis are accurate to certain parts, but necessarily, to myself as host. D.I.D. is often misdiagnosed and therefore mis-treated, often to the detriment of the person(s) involved. The sooner it is accurately diagnosed, the easier things will be in the long run. And it also means less interruption in adult life.

We follow quite a few systems who are a lot farther along in their healing than we are. When it comes to "healing" - that is generally a bit different for everyone. The basics of what it means would be a healthy web of communication between all the parts/alters/headmates/system members. It's kind of like taking a dysfunctional family to therapy in the hopes that people stop treating each other like shit or making incredibly juvenile decisions.

All of this is to say that, a lot of the members in my system are not in a place where we are even comfortable with our diagnosis. Some of us find it embarrassing. Some of us think it is complete bullshit - a really fun form of self-gaslighting. And some of us are more accepting of it, but we know acknowledging it aggravates other members which makes it a really difficult space to be in.

I'm going to lay out just a few general rules when speaking with a system:

Don't be afraid of us: We really aren't dangerous. Despite what Hollywood seems to depict, we aren't likely to lash out and attack you. We aren't secret underground serial killers. We aren't stalkers. We are human just like you. And the fact is that we are more likely to take out our pain and frustrations out on ourselves than we ever would externally.

Be aware of where you stand in terms of trust within the system: it takes a lot of time to build trust in any relationship. Systems have multiple members often with multiple histories of abuse. That means it is even more difficult for them to build trusting relationships. It takes A LOT of time and patience to earn the trust that allows you into the inner world of a system. Be aware that some parts/alters/headmates may be more willing to trust you than others. Some may never trust you. That's just the reality.

If you're in a position of trust, don't pressure through questions for answers that you'd like. This can be hard to gauge when questions may or may not be appropriate. And a lot of the time, it comes through trial and error. Some questions can be very triggering for other parts. Asking sentimental or emotional questions can often lead to an internal battle of "protective parts" becoming hostile as a way to protect whoever is fronting from what they may perceive to be an unsafe interrogation. I would say, in the beginning while a system is still very much working on building a healthy communication system internally, try to stick to easy questions like what's your favourite colour or what type of foods do you prefer? In the very beginning, don't even start with things like "who am I speaking with", followed by a simple question. Rather, if you suspect you are speaking to a different part - just ask the simple question. Some parts can feel threatened when they are being noticed. If you ask who you're talking to, or you're asking their name, it can immediately put them on the defensive and start an internal battle. Keep in mind, this is entirely from my point of view and where I am at in healing. Other systems who have done the work and are setup with a health internal communication system may very well be past this stage. That's the sort of thing you would have to ask them.

Pronouns. Probably the most basic and yet the most difficult because of the parts involved. Some are male, some are female, some may not have any gender at all. So, yeah, using the correct pronouns is going to differ between who you are talking with. As a collective, using "They/ them" is probably a safe bet. But, again, that requires a certain degree of comfort with the diagnosis itself. I still prefer "she" when it comes to myself. But I often interchange between "I" and "we" when communicating with others, which I am aware will make it very confusing. I think, as I get better at accepting things for what they are, "they/them" will fit more. But for now, I still get confused when someone refers to us as "you guys". Haha, it always takes me a minute. Not in a bad way, but just as a recognition that someone else is accepting of my system. I think that sort of external acceptance can help with self-acceptance as well.

This was mentioned in one of the links I shared about - but don't "out" a system without permission. As I've said before, it is very difficult for us to accept our diagnosis. And this sort of respect should be applied to any sort of condition. If a friend tells you they have cancer or that they struggle with addiction - would you then take that information to someone else to share? I hope your answer to that is no. Bottom line is that it is not your story to share. Ambushing a system is extremely dysregulating. A lot D.I.D. systems are covert - that is to say that there are parts dedicated to upholding the mask of a "singlet" (someone who does not have alters/ is not a system). This protects the system from judgement, shame, confrontation and unwanted questions. So, if you've gone and outed a system to someone else and that person then brings it up to the system, you are creating the perfect storm for dysregulation, dissociation and shutting-down. Furthermore, whatever trust you have built with that system has officially been broken.

Don't assume that we are able to do the same things you are simply because there is more of us to do the work. Ideally, it would be fantastic if I could do the work of several people because I have alters. But that really isn't the case. Switching (changing the alter that is most present), is extremely taxing both emotionally, physically and psychologically. It takes a lot of energy. When that energy is used up, it is taken away from other things that we could have done otherwise. Not only that, just because one alter is capable of doing something, it doesn't mean that alter will show up to the plate when that thing needs doing. A lot of the time there is little to no control over who is presenting - especially under times of stress. Furthermore, the more stress - the more switching, the more switching - the more draining, the more draining - the more stress. And the cycle repeats into a downward spiral. \

Don't assume that we our abilities will be constant throughout each day. This is where the "spoon theory" comes in handy. This is a common theory for individuals with chronic physical illness, but it also applies to those of us with mental illness. There is also something called "fork theory" which has more to do with Trauma-related illness because it focuses on events and external stimuli that aggravate illness such as poor finances, canceled appointments, change in routine. Anyway, the bottom line is that what we are able to handle from day to day will differ. We have a lot to account for, not just daily, but weekly as well. For example, this morning I did 40 minutes of whipper snipping. That isn't something I usually do - it is an extra - so it took something else away. Today, it meant that I didn't ride my horse. Which, I felt was a good swap because, today it felt like more effort to tack her up than it did to do 40 minutes of yard work. Even that will change based on who is most present and who is most willing to do the work. It's a lot to juggle.

8. Don't pressure us to seek a specific form of treatment or change medication. This has happened to us in the past where someone was convinced they knew what was best for us. It came from a position of caring, but it really wasn't healthy for the system. In any healing journey, it is important that the individual have a sense of agency. The second the system feels that agency being taken away, it becomes aggravated and defensive. It pulls back and does whatever it can to escape the pressure that they feel is being applied. Discussing treatment options is good, pressuring to what you feel is the best treatment option without considering the thoughts, needs and feelings of the system - not so good. But I think this is important for any support system of an individual. Don't reduce the person's role simply because they are not 100%. People deserve an active role in their healing. Most of all, they need to be heard.

Alright, so once again we didn't edit this. We won't edit it because that takes like 15 spoons. And we already used like 5 on whipper snipping. Take care! And please feel free to message us whatever questions you may have - we'll answer them when/if we are able ;)

[thedissociativerunner]

[thedissociativerunner]

Daily Life with D.I.D.

CONFUSING: A lot of the time we spend trying to figure out who we feel most like, or who is most "present". For those of you without D.I.D., it would kind of be like if you were really close with your family. So close that you had a hard time knowing the difference between your thoughts, beliefs and behaviours, and those of your family members. Maybe some of these things are pretty close, but you're still your own person. A lot of the time, we spend trying to understand who we really are. Maybe for some D.I.D. systems, knowing who is "fronting" or "most present", isn't important. But for me, it really is. It helps me understand why I feel the way I feel and even helps me to make predictions on what I can handle that day.

What makes this more complex is when there are more than one part (or alter) present. Now it is a whole new can of worms because the thoughts can be conflicting. The behaviours can tug you this way and that way. And, if someone were to ask who was present, we may not be able to say. We have however, learned some things that can help us narrow it down. One of the most bizarre ways is through our dreams. Believe it or not, a lot of people with D.I.D. have different dreams coming from different parts. I found this is helpful for long periods of time when I am not quite sure who is present or "co-fronting". Based on the age of those in my dreams or the subject matter, it can help me figure out what point of time I am stuck in or what part is present.

For more short term feedback, I've learned to look for the "inevitable slip-up". Basically, eventually there will be a tell-tale slip-up of something I know I would never do or say, but that can only be attributed to one part/alter. Looking for those and recognizing them when they do come up has been really helpful. For example, I just texted our mom to "bring us some cheese" from the event she is going to. I, myself am not a huge fan of cheese. But a couple of my parts are.

RELATING IS EASY: I think the most beneficial part of having D.I.D. (and for me, I still feel like there aren't really very many benefits), is that we have access to a huge variety of perspectives. All of the alters in our system have a different point of view. They behave differently, they speak differently, they even create differently. But, what is most important to this point, is that they relate differently to the world around them. That means that it is easy for us to put ourselves in someone else's shoes. We can understand the point of view of someone struggling with addictions. We can understand the point of view from someone who struggles with anger management. We can understand the person who is easily manipulated or conned, and we can even understand the behaviour of the person doing the "conning". Doesn't mean we actually actively participate in any of these situations, but we have an understanding of why people are the way they are; why people behave the way they do.

CONNECTING IS HARD: Connecting is hard for anyone with a history of trauma. This is in no way exclusive to people with D.I.D. But for our system personally, we tend to look at it as an investment. Simply put, are we able to commit to the investment required to form a meaningful connection with another human being? A lot of the time, the answer is no. And it has nothing to do with that person in particular. Unfortunately, it has a lot to do with our past experiences and history. We've made those investments, and they've cost us a lot in the long run. So, connecting is hard. We can understand and relate to a person's experience, but that doesn't mean we want to invest our emotional energy in a relationship. This relates to our next point:

EXHAUSTING: It's exhausting. Physically, mentally and emotionally. Switching (for those of you who aren't aware of what switching is, it is when a person with D.I.D. switches between one part/alter and another), has a huge cost in all aspects - at least for us. Whether we are trying not to switch or are suddenly forced to, it takes a toll. Not only that, but the awareness of other parts is almost constant for us. This varies from system to system, for me, I am generally aware of other parts while they are "most present/fronting" and also while they are in the background. The control over their thoughts and actions that I have varies based on how present those parts are, but we all still have a collective consciousness of what is going on. Some people with D.I.D. do not have this ability. They have periods of black-outs where they are not able to recall what another part has done while present. This carries with it a whole other set of struggles I am sure.

The other part of this is how much energy it takes to do what most would call "routine" things. There are a lot of things that sap my energy right away. Making phone calls, thinking of making phone calls, adding a phone call to my list of things to do... do you see a theme? Dislike phonecalls, even video calls. I don't know which is worse to be honest. Our best bet is texting or in person. But we don't like going out and sometimes answering a text feels like the BIGGEST deal ever. So yeah, communication is exhausting. Other random things that are a non-starter: going to malls, grocery stores, any sort of event with more than one other person (does that seem unreasonable? maybe, yeah, a little), doctor's appointments, filling up the car with gas, putting the cover on my duvet (but let's be honest - that pretty much frustrates every one who ever has to take on that challenge), elaborate cooking - I can do salads, wraps, pizza, an omelet, KD for the littles but nothing else. Anything outside of the routine, yeah - that's gonna cost us energy too. More than people who don't have a disability. Social media is difficult and draining. Conversations can trial and error. Sometimes I'm following, sometimes I'm not. The list goes on. Editing posts before I put them up...nope. This may or may not be funny based on whether or not I have lots of errors.

NOISY: Yeah, it's loud. Not externally, but internally. You know that voice in your head that kind of says things to you - basically you talking to you? Yeah, well people with D.I.D. have A LOT of those. So for me, it isn't ever really quiet. And if anyone here wants to mention "maybe you should try meditation," oh boy, no thanks. Shove that suggestion because it ain't happening. There's a lot of random conversations that make it impossible. The conversations are not often to do with anything that is currently going on around me. For example, I could be working with my horses and there will be a conversation going on about whether or not Bananas should be considered a fruit and a list of valid points for both parties on both sides.

For people without D.I.D., it's like spending a lot of time with your coworkers. Imagine you spend all day with them (maybe they're fantastic and fun and the most amazing people you've ever met, or maybe they are absolute dicks and they always leave their desk a mess and don't really care about you at all), then imagine that you get to go home to your 400sqft bachelor pad and they ALL get to come with you and live with you! Sound fun? Yeah, not really.

SENSITIVE: So it is also really noisy externally. Again, this isn't at all something exclusive to D.I.D. It is something a lot of people deal with; something a lot of people with disabilities or neurodivergence's have to deal with. Noise is the most difficult part for me personally. I hear sounds most people don't pick up or aren't bothered by. Sudden noise causes pain in our brain (hard to explain, but if feels like a rush of fireworks exploding), and can cause us to outburst in anger. It's not just annoying and dysregulating for us; it also takes a toll on the people in my life who know about it. They try really hard to be quiet and keep sensory disruptions to a minimum. I hope they know we appreciate it and we know it is hard. Other random things; repetitive movement (feels a little hypocritical because some of us tap incessantly), bright lights, smells and visual gore can bother SOME of us. Others enjoy horror movies and zombies. It really is a mixed bag.

And of course, our least favourite subject - "feelings". Some of us are super sensitive to insults or the behaviours of others, some of us couldn't really care less and are socially distant and very guarded.

MILDLY ENTERTAINING: This is probably true for people who see the different parts. It is mildly entertaining to me as well. Especially because I am at least partially aware of what is going on, so I'm able to see how someone else reacts to what one of our alters might be saying or doing, or asking. Some of us are blatantly honest, some of us are still quite naive. Either way, the things that come out are sometimes right out of left field and it can be interesting to see how other people react.

There is also a lot of negotiating, which can be frustrating quite often, but also entertaining. Myself and fellow-system friends joke about this quite a bit because it is not only relatable, but also vital to having some sense of order from what was clearly a chaotic start. I call it out as basically a meeting at the G8 Summit. Everything is a vote - or at least major decisions are. There are some parts you know will never get along, will never be "constructively helpful" or will never even come to the table. And you gotta work through it. Those systems who have an even number of alters can be left with a hung jury. I'm grateful I'm not one of them. But, yeah, we gonna go left or right at that stop sign? - not sure. Gonna have to put it to a vote.

UNPREDICTABLE AND MESSY: One of the hardest things about any sort of disability is its unpredictability. What I am able to do one day, I may not be able to do tomorrow. A lot of time is put into making a "baseline of predictability". For us, that means we have a schedule of things that we do every day. These are things that we are ABLE to do. These are things that we can do with minimal disruption to our levels of stress. It helps us make order out of the chaos in our mind. We do these things every day, at a specific time every day, and we feel more regulated for having completed them.

Of course, you can see where this becomes problematic. Because when we are unable to complete one of these activities, due to unforeseen circumstances (I don't know if you've notice, but life in general, is itself quite unpredictable), it disrupts and dysregulates the whole system. How much it dysregulates is influenced by any number of factors including - how long the situation interferes with our schedule, how many other things are already added to our list of responsibilities, the severity of the sudden change, how unpredictable the change actually was; and even what the weather is like. Crazy, but heat has a huge impact on our ability to handle additional stressors. We are far more likely to dysregulate during extreme weather conditions such as heat waves.

Traveling is not something I am able to do. Changing my environment is a system overload and it alters my routine far too much.

LIFE (ALTER)ING: One of the hardest things we have to do is grieve the loss of the life that we thought we would have. In highschool, I never once thought I would be on disability. I was a high achiever. I aced all my classes. I turned every assignment in on time. I rarely, if ever, missed school. I wasn't exactly social, but I had a "socially acceptable" amount of friends. I had career hopes. Among that list of aspirations were dreams of being a police officer, joining the RCMP, working for the Red Cross with disaster relief, Large Animal Emergency Rescue, the military, victim's advocate... the list goes on and on. The common theme here being that these are all highly stressed career paths. When you have a mental illness that is triggered by stress and heavily influences by your environment, those types of career dreams are quickly ripped away from you. My thoughts of being independent, living with a partner, having my own house and savings - that seems preposterous to me now. Because we aren't able to travel, we miss out on family events. And even if we could travel, seeing a lot of family members all at once is often too overwhelming and dysregulating. It really sucks.

Even finishing University or College, those things were no longer viable for my condition. Not saying that other D.I.D. Systems have been unsuccessful in these endeavors, but this type of illness affects us a little bit differently. For me, I struggle to imagine myself in any sort of "mainstream" work environment. While I do believe that my ability to find some sort of career path is still down the road (a long way down the road), I do not think that we will ever fit into the current model of employment. I still hope that we are working toward change and a more adaptable work force, not just for people like me, but for all people with disabilities or who are neurodivergent. I truly believe that society's ability to adapt to a changing workforce depends on how well we listen to those we have been ignoring - the disabled population. But that's for another post ;)

I tried to make this post a little bit comical - humour is my go-to for awkward trauma related discourse - but maybe it didn't come through. Anyway, when it comes down to it, any form of disability is difficult. It all has its unique challenges and we all have our strengths as well. Being honest about the struggles and triumphs of disability is the best way to increase awareness of what it is really like to live with a disability. Without honest discourse, we are either sugar-coating or dooms-daying an important aspect of growth and development toward a more inclusive society.