Strategies That Help Me Manage Life With Dissociative Identity Disorder
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Someone says something I don’t remember saying and there’s an awkward moment where I’m caught off guard and struggling to figure out how to reply.
I feel them waiting for me to say something, to acknowledge what they are referring to. I want to blurt out that it wasn’t me they were talking to (or that it was me, but it wasn’t…) but instead I try to disguise my confusion, sometimes using humor or a question to deflect, buying time as I reach inside my brain and try to retrieve anything that will help me out. I’m doing more than retrieve information, I’m trying to connect with the part of me that was there for that particular conversation. Sometimes I’m able to be co-conscious with parts and access information, but other times I take a step back inside and another part who is more “in the know” takes over.
I have dissociative identity disorder, which often feels like an extreme form of compartmentalization, but is so much more than that. It takes a lot of energy and organization to manage and to make things appear seamless when in fact everything feels very disjointed, fragmented and chaotic to me. I have different parts (some people prefer the word alters) that don’t always work together, which can cause me to lose time as well as not be able to access information or skills on demand.
These parts aren’t separate people, although they often feel like it, but rather distinct parts of myself that remain disconnected from each other. I have been in trauma therapy for awhile now, so I do have communication with some parts, but amnesic boundaries remain a source of frustration. I don’t consider myself to be forgetful, despite episodes of amnesia, and I pride myself on being organized, so when I’m caught up in inconsistencies and gaps in information and knowledge I feel really thrown off. No one likes being out of the loop, and feeling out of the loop with yourself, other parts of your system, takes that experience to a whole new level. It’s easy to get frustrated, defensive and even shutdown, but that’s not a sustainable way to manage and goes against my goal of having better communication systemwide and working as a team. So what does help?
Permission to Pause
Permission to pause is an effective and gentle way to help. Sometimes I just need to give myself the time and space to get present and manage the situation as best as I can. I remind myself that other people forget things too and that this probably seems worse in my mind than it looks from the outside. Most people can’t tell if I’m switching and don’t associate any lapse in memory as being related to DID.
I’ve been having a lot of meetings on Zoom and Google Hangouts during the coronavirus pandemic, sometimes jumping on calls with my emotions right at the surface, fighting dissociation at times or talking with colleagues right after a therapy session. Being alone in my apartment for weeks on end and talking to people only though video at times can feel very disorientating and disheartening. In order to be thoughtfully engaged in the conversations I’m having, sometimes I need a moment to orientate to the present. This might mean pausing before I answer and running through my thoughts internally first before putting them out there to see how they sit with me. Sometimes I try to reach internal consensus inside but mostly I aim to communicate as authentically and thoughtfully as possible. This can make me feel vulnerable, but during this time I’m finding that to be more empowering than ever.
Sometimes during a video call I reach for a stone or crystal just off camera and hold it in my hands or place it on my lap. This is sensory input for my brain, helping me be more mindful and not go inside myself. The weight of a stone or some object can feel grounding and serves as a reminder to slow down and take my time. These physical objects help connect me to the moment making it easier to actively listen and consider any questions that come my way. Limiting distractions in my environment and taking notes can also be helpful, but they don’t guarantee I won’t switch. Something might come up that positively or negatively triggers another part out or I might be dealing with a lot emotionally and/or physically on a particular day and therefore be switching more frequently which makes it more difficult to stay attuned to the present. But I can set myself up for the best possible outcome and be patient when things don’t go as smoothly as I’d like. It’s OK to slow down, in fact slowing down can be the best way for all of us to take care of ourselves during this time.
I have a large format day planner on my desk at home that all parts use to keep track of things. I record appointment and meeting times, bill payments, to-do lists and more to help make sure we show up where we are supposed and do what needs to get done. It’s very easy to feel like things are out of my control or slipping through the cracks when I have different parts carrying out various tasks and not enough communication between them. Parts use the day planner in several ways, from younger parts using stickers to mark days and information that are important to them, to some parts using it to plan, to others sharing what kind of day they had, to simply keeping record of what needs to get done each day over the course of a week, month or year. Routine and structure are really important to me but feel even more necessary during this coronavirus pandemic. Having a roadmap to take this lockdown day to day helps my system navigate what could be a very destabilizing time.
During this pandemic, I’ve been also been using the day planner as a way to look forward with as much optimism as I can. Sometimes just noting one thing I’m looking forward to each week helps with this. For my system, sessions with our therapist really help keep us going and we look forward to the times we can talk with her. We also love going outdoors for a break so I mark on the calendar the days when it’s going to be sunny and warm. But obviously there are many more hours spent alone inside. I find it helpful to highlight downtime in the day planner too. For example, some parts really look forward to painting so seeing that there is a block of time on the calendar just for them can really help. Unscheduled downtime, especially when you have days of it, can be very daunting, so having a clear idea of what you might do during that time can help you feel less adrift. Having some purpose for each day, even if small, keeps me from falling permanently into a depressive state. Encouraging all parts to use the day planner helps us all be on the same page and keeps things running as smoothly as possible, particularly at times when things could fall apart.
My therapist often tells me to keep track of when I switch and what parts are out when, which sounds reasonable (and of course would be useful information) but in practice is a huge undertaking and sometimes even an impossible one. I’ve modified my goals during this isolation period a bit, trying to document what parts are out during sessions rather than trying to account for the whole day. Sometimes I’ll make additional notes if I know, but I don’t stress out about it. I think it’s OK to adjust goals and expectations when things feel like they are too much already, that’s the healthier thing to do in my opinion. If you have been pushing yourself too hard lately and starting to feel the impact of that, please give yourself a break. Check in with yourself regularly. Sometimes a slower and gentler pace is the best way forward.
I put everything into my digital calendar, not just when an appointment or meeting might start, but also travel or prep time depending on what it is. Adding the address, contact information and directions to a destination also reduces the chance of anyone getting lost along the way. Obviously being in lockdown right now all my appointments and meetings are online so there’s no need to note address or directions. Now I find myself noting on the calendar whether I’m using FaceTime, Zoom or Google Hangout, links to any relevant documents and any reminders about the appointment or meeting. It’s nice to have all the information I need in one place.
Many people use sticky notes to remind them of things they need to do or to jot down quick notes, which I do as well, but myself and other parts also use sticky notes to communicate with one another. Sometimes a part will use a sticky note to ask a question, make a request, vent or just let me know they are there. The nice thing about sticky notes is their size provides a container of sorts, keeping any notes or messages from becoming too much to tackle or digest at once. This is particularly important right now as it’s easy to shut down emotionally, disconnect from oneself, get stuck in trauma time or even regress in terms of the ability to be co-conscious with some parts. I need to know what’s going on internally in order to manage, stay present and not get blindsided by a part carrying a lot of trauma memories or an emotional state we’ve pushed aside. When I was in residential for eating disorder treatment a few years ago we used to sometimes write sticky notes and post them on the bathroom mirror to encourage, inspire and soothe us. This is a practice I return to when I feel I need a little more internal support. Sometimes I’ll post a quote that resonates with my system or simply write a note saying, “I see you.” Both can be very powerful. A little more self-care and self-compassion, particularly right now, is really important for all of us.
Notifications and Timers
A lot of people turn on notifications for social media, emails and calendars so they don’t miss anything, but notifications play a larger role for me. I set notifications on my devices to keep me from dissociating, remind me of tasks I need to accomplish and keep attuned to the present time. With DID, losing time is a constant source of concern and under the current situation, spending so much time indoors physically alone, time seems to slip by even more easily. I also use Recovery Record, an app for eating disorder recovery, to remind myself to eat. I’ve been in solid recovery from anorexia for a few years, but I also know situations like this are a huge trigger for me. Some days I have no appetite or I get caught up in work or just feel more dissociative and forget to eat. Skipping meals means I’m more likely to take in less calories and I start getting use to a different level of fullness, which doesn’t sound like a big deal, but from past experience I know this makes it much harder for me to return to the amount of food I need to be eating. Even worse, if I lose weight and go below a certain number my eating disordered brain can get reactivated and things can go downhill from there pretty quickly. Recovery Record lets me send notifications to my phone, which is an unobtrusive way to remind me of the time and give me a little nudge to nourish myself if I need it.
I haven’t been doing any unguided journaling while self-isolating because when I start writing without a focus it’s easy to slip into dissociation. Writing can be a way for parts to express themselves which is great, but it can also bring up material I don’t want to get into right now. My main priority during this pandemic is to stay grounded, practice containment skills and keep my system safe. Currently I’m using my journal to add structure and routine to what can otherwise feel like days bleeding into other days with no end in sight. Keeping my writing focused keeps my thoughts from overwhelming me. Every week I pull an angel card, writing down its message, noticing how it shows up during the week and then taking some time to write reflections. Every day I write down three little joys or comforts I experienced during my day, noticing the simple things that truly add so much to my day. And each week I answer the following prompt: This week I need_____, I’m grateful for _______, and I’m letting go of __________. Including these small little guided writing exercises into my week provides some steadiness in an unsteady time. They also provide gentle reminders to focus on what’s OK right now rather than giving into any fears I might be experiencing.
Emails to Myself
When I need to give myself the heads up about something or need something to get done, I often write an email to myself. I put keywords or instructions in the subject line and keep any message very brief in the body of the email. This approach benefits my system in a lot of ways. For example, I might need to get some things done first thing in the morning so I send myself an email the night before. All parts check email so someone will see it the next day and decide how to respond. If a younger parts sees it and doesn’t know what the email means or what to do, they will likely go more inside allowing an older part to take over. Generally though older parts are out more in the morning so a lot of things can get done.
Pre-COVID-19 lockdown days, I used email to help orientate parts when we were out in the city. There were a lot of times in the past where I’d get lost or overwhelmed and that didn’t feel safe. It’s very scary to go very young in public and puts my system at risk of getting hurt. For this reason, I began writing emails to myself before heading out, outlining what the plan was for the day, directions to where we were going, who I was meeting up with, how to get back home and anything else relevant. This strategy has really benefited my system. One time I went to a concert by myself in an area I’m not frequently in and I knew going into this that there was potential for things to go wrong, especially as the nighttime can trigger out younger parts. I wrote very detailed instructions of what train to take and directions for once we left the subway of where to turn and what to look for to know if we were going the right direction. I even added a reminder about stopping to pause outside the station before taking off so that we’d be more aware of where we were, taking notice of our surroundings and making the right decision about where to turn. I wrote similar instructions for the return trip home. The night went smoothly and I was glad I took the time to do this. I did this because I have DID, but I could see this being helpful for someone struggling with anxiety, panic attacks and other conditions too.
During COVID-19 I’m not going far from home or doing much in the city except get essentials, but I still use emails to keep parts in the know and help us orientate to the current time and our surroundings, whether it’s an outline of what needs to happen on a given day or instructions for going to the pharmacy or grocery store. Sometimes I just send a greeting such as “Today is Monday May 4, 2020. Take things moment by moment. You’re not alone. I’m here for you. We will get through this, I promise.”
I have a lot of tools for helping me to stay on track, informed and in communication with parts, but not being hard on myself when I do forget something is the kindest and best way I can support my system. If you take anything from this scary and uncertain time, remember to show yourself and others compassion. We may all be sheltering in different shelters, with different resources, under different circumstances and with different past experiences impacting us, but we are all just trying to weather the same storm.
Concerned about the coronavirus? Stay safe using tips from these articles:
- For Anyone Who Needs to Hear This: It’s OK to Just Exist Right Now
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- 10 Face Masks People With Chronic Illness Recommend
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- If I Get COVID-19 It Might Be Ableism – Not the Virus – That Kills Me
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