Two DID systems wrote this survival guide. We wish we had been given this information when starting our journeys, and hope it helps others. We are not mental health professionals. If you haven’t already viewed it, you might want a copy of the Dissociative Dictionary handy. Much of this guide will also apply to OSDD systems.
Coming to Terms with a Diagnosis
It can be hard to accept that you have any disorder. Dissociative Identity Disorder is particularly challenging because it tries to keep itself hidden by its very nature. DID exists to keep those in the system unaware of the trauma they experienced – and, by extension – unaware that they have DID. If they knew they had DID, they’d wonder why. Therefore, the brain immediately wants to shut down or block out any possibility that it has DID because that goes against the protections it set in place. It will be very uncomfortable to push through that barrier for most systems. Even years into a diagnosis and knowing you are a system, being aware of your amnesia can still be difficult because you’re not supposed to know you have amnesia. You can forget that you forget.
It can be especially tough to accept a diagnosis if your therapist or psychiatrist was the one to first bring it to you. It’s one scenario for you to start catching on to being a system yourself, take that to a therapist, and seek help. It’s another thing for a therapist treating you for something else to tell you – seemingly out of nowhere – that they spoke to someone else in your body and that you have DID. It’s OK to get a second opinion, especially from a trauma specialist!
Consider yourself a detective of your own life. Realize that you’ll be biased, but open yourself to the possibility your diagnosis is correct. Interview people in your life, and start collecting physical evidence – writings, pictures, recordings – in a case file. Make backup copies of this case file, as alters may throw it away! While it can be scary, having people record videos of your alters can be greatly convincing. Share the data with professionals and others in your system struggling to accept the diagnosis, and refer to it when you have doubts.
Acceptance will vary between alters. Some may already be aware of being part of a system. On the other hand, some may need three diagnoses, piles of evidence, and years to come to terms with it. That’s OK. The brain has spent most of a lifetime hiding this information from itself; expecting it to reverse course quickly is unrealistic. So, have patience with yourself and those in your system.
Improving Day-to-Day Life
Living as a system is incredibly complex – it can feel like a full-time job just trying to figure out how to function. Every system will have a unique recipe for how to get through day-to-day life smoothly, but here are some suggestions. You can add these tools to your tool belt, discard them, or pick them up later. What’s important is finding what works for you!
System Communication Techniques
Communication with your system is one of the most important aspects of recovery. Here are some methods to try.
There are many ways to journal; finding the best fit will likely take time and experimentation. It may never wholly settle and will probably change as you and your system grow. In addition, different alters may have different journaling habits and preferences. You can invest in small, cheap journals so each alter can have their own private journal. Respect each other’s privacy and write notes requesting that people make it clear if they want their journals to be read by other alters. Then, invest in a larger shared journal that you and your system can write back and forth within. You’ll have to try different things and see how they work for your system. Only spend a little money on journals and supplies because you may need to restart your journaling structure a few times. Dollar store supplies are a great go-to! Leave your shared journal for other system members to see, and write even if you don’t feel you have much to write about. Even if you don’t think others have switched in, amnesia can fool you, so check the system journal regularly. It can be a great way to open communication when others see you’re making that effort. They may decide to respond to something you’ve written. While that can be scary, it can also be a huge turning point in terms of communication.
Methods of Journaling
There are infinite journaling methods, but here are some common ones. So, if you need help getting started, look through this list and see if one of these inspires you.
- Stream of Consciousness Journaling involves writing continuously for a set period without pausing or editing yourself along the way. You may wish to set a timer on your phone. This type of journaling aims to let your thoughts flow without judging or censoring yourself. This method can be beneficial in identifying thought patterns and gaining insight.
- Gratitude Journaling involves writing down things you’re thankful for. It can help you shift your focus away from negative thoughts and cultivate a more positive outlook. It can also help you develop a deeper appreciation for people, things, and experiences in your daily life.
- Art Journaling combines writing with art. Art Journaling can include drawings, paintings, collages, or any other art form. It can benefit people who struggle to express themselves through words alone.
- Bullet Journaling is an organizational method describing how the journal is set up. Bullet journals have dots on a grid on their paper, and bullet journaling utilizes symbols and notes within those dot frameworks to keep track of tasks, goals, and ideas. Often, bullet journals include daily reflections and habit tracking. Bullet journaling is popular for its aesthetics, flexibility, and adaptability to an individual’s needs.
- Prompt-based Journaling involves using specific questions or prompts to guide your writing. It benefits those who feel stuck or unsure of what to write about. Prompts can be related to particular themes or topics (i.e., mental health, relationships, personal growth, creativity, etc.).
- Reflective Journaling involves reflecting on past experiences and what you’ve learned or gained from them. It can be especially helpful for processing difficult emotions and experiences and for identifying patterns and areas for growth.
Notes & Boards
Notes and boards (whiteboards/corkboards) function similarly to journals in some ways, albeit in short form. They don’t necessarily give as deep of a value as journaling, but they are more visible and straightforward when it comes to communication. They are also less subtle. Notes are much more conspicuous than a journal if you need your space to be ‘masked’ for any reason (roommates, family, etc.), so use care.
Vocal Communication (Talking out loud)
Talking aloud can be a great start to building internal communication with your alters. It can feel very uncomfortable, but it’s worth pushing through that discomfort – even if you hear nothing back. Even if you’re talking about nothing, simply speaking and opening the space up for others is a huge step forward for communication. It might feel hopeless if you hear nothing back, but remember that you are showing the others you are trying to communicate. Much of what you do in building communication is not trying to get things out of your alters but showing that you’re putting forth the effort to connect and make space for them. Especially at the beginning, a lot of trust needs to be built, and it may take a lot of time for your alters to trust you enough to respond or communicate back. Consistency in reaching out and making space with them can be hugely impactful. Done privately, talking aloud may also be safer than notes or whiteboards if you’re in a situation where you don’t have privacy, and non-system members might be reading through your writing.
Communicating Through Others (Therapists, Friends, Partners, etc.)
Communicating through others is one of the quickest and most effective ways to build system communication. However, it comes with some potential issues and things to consider:
- First and foremost, you must ensure this is someone you AND your alters can trust! It’s not enough if only you trust them – alters may only communicate through a person if that trust is shared. (Some alters may have significant trust issues, and this form of communication may not work with them. That’s OK! It’s one reason using multiple forms of communication is essential.)
- Secondly, you must ensure that the person you’re communicating through is comfortable with this. You don’t want them to feel used. While it can be incredibly helpful to have a partner – a roommate – a friend – a therapist – who can relay messages and tell you what happened when another alter was out, you shouldn’t just assume that those in your life are automatically willing to play this role. Your therapist is getting paid to do this for you, but check with others first.
- Thirdly, other people can forget things too and be unreliable. That’s not on them. You don’t want to put your friends and loved ones in a position of feeling like they let you down if they forget to communicate something with you. Always try to use your own communication techniques as well.
This technique can be one of the most effective and fastest ways to build communication within your system. If you have someone you and your alters trust who is willing to help you with this, try adding it to your communication techniques. It will assist you in many ways. Just be safe and make sure you trust the people you communicate through.
Internal communication is going to work differently for every system. Some systems talk and hear voices in their head. Some systems see each other and can touch and interact in the inner world. Some systems communicate through memory sharing. Internal communication grows with trust, time, and the other mentioned techniques.
Tips for Grounding
Work out your grounding techniques beforehand, and practice them often – even when you’re not in crisis. Practicing them when you are calm will help program your brain that this is how to center itself. You want a habit you can comfortably slip into, not something you’ll only associate with emergencies and spiraling out of control.
Prepare grounding stations where you spend the majority of your time. These can be baskets, shelves, or cups of tools you can use for grounding – they can be objects to smell, touch, etc. Having them nearby and accessible can be invaluable in a crisis.
Finally, have a plan for what to do when things get bad. It can be as detailed or flexible as you like. Which grounding techniques will you try? If it gets really bad, is there someone you can contact or somewhere you can go? The wrong time to figure these things out is when you can’t think calmly and clearly. Write your plan down in your system journal, and consider doing occasional “fire drills” to practice it.
Scent can be an excellent way to ground and an incredibly convenient tool you can carry with you. An essential oil in your pocket or bag is simple and easy. Lighting incense or a scented candle can also help calm your space. Combining smells with taste can also be very helpful. For example, you could open a mandarin orange, smell the peel, and taste it.
Feeling different textures can help with grounding. Fuzzy things, bumpy things, scratchy things… All of them can help you ground back to your body and away from wherever your mind is going.
Try putting an ice cube on your body as a shock to your system – if you don’t have access to ice, even running your hands under cold water can work.
Take a look around you for a repeating pattern. Find blinds over a window, tiles on a floor, or something along those lines. Begin counting. See how far you can get before you lose count. Once you lose count, start over. Keep going, test yourself, and make it a game to see how far you can get before losing count. It will distract your brain and help you ground.
The 54321 technique combines several methods and asks you to identify the following:
- Five things you can see
- Four things you can touch
- Three things you can hear
- Two things you can smell
- One thing you can taste
Repeat as needed.
Literally, Find Ground
Take off your shoes, go somewhere you can safely and comfortably get close to the physical earth, sink your body into the ground, and relax. Physically grounding yourself can be surprisingly impactful to your body and can help you find calm.
Warning: This section discusses difficult things about being a system. Read this section only when you’re in a stable headspace and know that it will address some complex, challenging topics.
No one should have to accept a lack of autonomy over their own life. No one should feel forced to give up their dreams for others. But, unfortunately, the situation is different when you’re part of a system. To function and survive as systems, we must accept these things to a degree. And that can be very difficult to come to terms with because nobody should have to accept these things. It’s unfair, and being upset about it is OK. These are some of the most complex and mentally exhausting parts of being a system in the long term. However, that’s why integration (not fusion) and starting to view yourself as a collective and working together is so important. Just remember that it’s OK to be upset and that no one should have to accept these things. This disorder developed because of events that should never have happened, but we can’t change that – we must find ways to cope. These are steps needed to function healthily and smoothly as a system.
Lack of Autonomy
Not always having control over your own body can be very scary. To open your eyes and have a new piercing – a new haircut – or even something more significant like a new pregnancy – can be world-shaking. No human being in the world should have to allow someone else to make choices like these about their own body. But, unfortunately, when you’re a system, that’s the scenario at hand. The better your system communicates, and the more your system integrates (not fuses, integrates), the better you’ll be able to collectively make decisions about big life choices and the lower the chances of big surprise moments.
That said, it’s not all about the big moments. Much of the struggle with having a lack of autonomy is over the little stuff and day-to-day issues. You’ll have to work on coping with these moments on an individual alter-to-alter basis. Work on communication, work on acceptance, work on integration, and allow yourself to grieve. It’s OK to grieve. No one should be in the position you’re in. No one should have to give up what you have to give up. It’s not fair. Don’t let yourself get caught in the grief – allow yourself to feel it, but then move through it.
Plans, Goals, and Dreams
When you’re a part of a system you’re sharing time. You don’t know what the future holds, even more than the average person, who can at least expect to stay themselves. Even if you’re the host now, you don’t know if that’ll always be true. Your system could look completely different in two, five, or ten years. There can be host changes, role changes, fusions, dormancies, and more. That doesn’t mean you can’t have goals. What it does mean is you have to be realistic. That’s where it gets harder on alters with less time out in the body than others.
If the system is struggling for money, it isn’t a good idea for them to invest in supplies for a hobby for an alter who fronts incredibly irregularly. Likewise, it’s not wise for a system to choose a career path because of an alter’s dreams and passions when that alter doesn’t front enough to actually be the one to do the work for that career. That can be a tough pill to swallow. Compromises can be worked on, and hobbies can be built, but you need to be realistic about who will likely be carrying the workload and what they can and will be inspired to do.
It’s a good idea for any system (particularly systems with lots of changes or systems that have a suspicion that they might have a host change soon) to think ahead. For example, if the host fused or went dormant, who out of your system would step into their role? Could they take on the job you’re doing and the path you’re on? It’s a good idea to choose a path that not only the host but several of the frequent fronters can handle, both so that there’s some ease day to day, but also in case there’s a big shift in the system.
A lot of this comes down to balance. A system only has one shared lifetime, but many people’s dreams exist. There are ways to nurture those inspirations and not just shut them down, but there needs to be realism too. Allowing all those dreams the size and space someone would give them if they were not sharing their time, resources, and energy with a whole system of other people will leave a system drained, bankrupt, and without enough time to get deeply into everything anyway. A balance of nurture, realism, and acceptance is essential. It will be different system to system and alter to alter, but you’ll figure out what works with time, communication, and compromise.
How to Talk to Others About Your Disorder/Diagnosis
Determining Safety in Opening Up About Diagnosis
By telling someone you have DID or OSDD, you are telling them you have significant trauma. Depending on your stability and circumstances, this can be quite dangerous to be open about. There are people who prey on traumatized individuals and see them as easy targets. If you could become triggered and go into a vulnerable and easily manipulated state, telling everyone you have trauma could be a big safety issue.
Additionally, there is much stigma and misunderstanding about these disorders. People have lost jobs and lost custody for being open about having them. And, once you’ve made the information public, you can’t pull it back. We recommend keeping your diagnosis to yourself and a few trusted people unless you know you can protect yourself and are willing to accept the risks.
That said, one of the only ways to fight the stigma and misunderstanding of these disorders is by being open about them. If you are stable and secure enough to do so, it can be a gift to the community to become an educator and advocate. You don’t need to reach thousands of people to make a difference. Part of what makes LGBT pride successful is people realizing that these are their friends, neighbors, and co-workers. The same applies to those of us with mental health issues.
Telling Someone you have DID/OSDD for the First Time
You’ve decided it’s safe to tell someone you have DID or OSDD. How do you go about actually telling them, especially with all the stigma these days? We suggest starting the conversation by asking them if they know much about dissociative disorders. Don’t mention anything about having a dissociative disorder yourself. Just bring up the topic as a discussion and see what they say. If they seem open to discussing it and respond as a decent person, recognizing that it’s a legitimate disorder, that’s a green flag to move forward. If they respond with, “Oh yeah, you mean that thing all those freaks are faking online?” that’s a solid red flag. Don’t let that hypothetical situation scare you, however. The bad eggs are loud online but fewer in the real world. Most people we’ve told have been incredibly understanding, wonderful, and accepting and simply try to listen and learn.
Once you’ve moved past the “Do you know anything about dissociative disorders?” question, you can let them know that you’ve been diagnosed with a dissociative disorder, or that you think you might have one. Once again, see how they respond. Do they tell you they think you’re wrong? Do they diminish you in any way? Do they ask inappropriate questions or make you feel any red flags coming up? Alternatively, are they supportive? Are they trying to ensure you have the right accommodation and care needed to be safe and succeed? Are they ensuring boundaries and checking what you might need from them? Do you feel red flags or green flags from simply mentioning that you might have a dissociative disorder or have been diagnosed with one? How they respond is a good indicator of whether telling this person about your system and which dissociative disorder it is will be safe.
If you decide to continue the conversation, remember that you don’t have to tell them all the details at once. In fact, it’s important to check in with them because you’re talking about trauma they might also have experienced to some degree. It’s also a lot of information, and they must completely readjust their understanding of their friend. It’s entirely in their rights to learn about your system in phases and to take breaks. Have consent check-ins, and don’t overload them with all the information at once. If you can, try to continue the conversation on the same day. Go from “I have a dissociative disorder” to “It’s DID/OSDD”. It gives them less time to speculate on which disorder you have, and there’s less chance they’ll go researching and possibly learn about DID/OSDD from incorrect sources.
When you do have the conversation and tell them about your disorder, keep it simple and to the basics – for example:
“I have dissociative identity disorder or DID. It comes from childhood trauma. It used to be called multiple personality disorder. It’s super stigmatized so please don’t associate it with what you know from movies or TV. Basically, repeated trauma before a certain age can make amnesiac walls go up between parts of the self to cope. Just as people with different memories and experiences will develop differently, so do these parts. It’s usually a very covert disorder hidden even from the person themselves because of their amnesia. I’m still figuring it out, but I wanted to tell you. If you want to ask me any questions about it, you can.”
Unmasking Around People Who Know
It can be difficult to unmask around people who know you’re a system, even after you’ve told them. This can be especially frustrating if you actively want to unmask and want to tell them who is fronting. This can be difficult to understand, and not just from the outside. It can be hard to understand yourself. “Why can’t I just do this?!” There are decades of protective habits in place that want to keep you from unmasking. It can be incredibly hard to break those down. Thinking logically, “I believe this person is safe and they know I’m part of a system” doesn’t immediately break down those walls. Anyone in your life who is truly safe and healthy will be understanding if you take time to unmask and won’t be upset. If someone pressures you to unmask, however, that’s a very big red flag.
Guilt Surrounding Masking & Using Your System Protections Once You’ve Told Someone
It can be hard not to feel like you’re lying if you decide to mask around someone you’ve told about your DID/OSDD. It’s not lying, and it’s always OK to mask for your own comfort. For example, if the host is A, but you’re fronting and you’re B, it’s OK to say you’re A if your friend asks who’s out. It’s not bad to continue to mask even though they know you’re a system. It’s a vulnerable thing to unmask. There can be a lot of insecurity surrounding it because of the self-awareness required not to naturally slip back into masking. You shouldn’t feel like you must unmask or work to keep the mask down once you’ve told someone it’s you. Masking is one of the tools you developed to survive, supportive people will understand if you don’t just stop doing it.
Developing Safe Coping Skills to Replace Destructive Ones
Coping skills are very important for managing difficult situations, but not all coping skills are created equal. Some can be harmful. It’s important to develop safe coping skills to replace any destructive ones you might have.
First, you need to identify what your destructive coping skills are. Some destructive coping skills aren’t as easily identifiable as others, so taking time for deep reflection is important. You’ll probably have some that aren’t immediately obvious, especially because of the whole amnesia thing. You can journal or talk with a therapist or trusted friend (get their consent before having this conversation) in order to figure out what you’re doing that might not be healthy.
Once you’ve identified what’s not working, it’s time to replace those destructive coping skills with safe ones. You can do many things to take care of yourself when in a heightened state. Unfortunately, we cannot offer you a perfect answer or quick fix here, as these things will likely be very individualized, but once you’ve identified what you need to replace and made the active decision to work on it, that’s most of the work. After that, you just keep trying to replace the old coping skills with new things until something sticks. It just takes time and practice.
It’s important to motivate yourself and reward yourself for progress, no matter how small. Developing new coping skills can be hard, but it’s worth it for the benefits to your health. When you have successes along the way, do something kind for yourself, and celebrate in some healthy way.
You will occasionally have setbacks and fall back to unhealthy coping mechanisms. That’s OK if you don’t give up on the work. Just be patient and keep at it. If you need extra support, it’s an excellent idea to reach out to a therapist or to lean on your friends and family – again, remember to ask for consent when it’s not a therapist.
Dealing with Denial & Self Doubt
Denial is very common with DID/OSDD systems. The vast majority of systems have been victims of sexual abuse, and denial is an incredibly common experience for survivors of SA. Also, DID/OSDD developed to allow part of the self to deny a traumatic experience was happening to them – denial is an integral part of the disorder.
Trying to grasp the entire picture of your life with the disorder can be overwhelming when you’re already struggling with denial. We recommend thinking of a specific tethering moment to help. When you’re not in denial, prepare by finding one clear moment when it was very certain and obvious that you had this disorder. Don’t try to list them all. Just pick the clearest and strongest memory. Then, when denial inevitably shows up, return to that memory and focus intently on it. Remember as many details as you can and why you picked this memory to return to. Try saying something aloud like, “I know I have DID/OSDD because of <specific memory>”, then ground. While it may not cure the denial, it will help avoid spiraling down into it.
Feeling like ‘My DID isn’t bad enough/isn’t like all the other DID I see’
It’s important to remember that the things you see in the media and online can be incredibly exaggerated. Even if people are being genuine on things like social media, the algorithms and things that people will click on will naturally boost the more ‘controversial’ and ‘attention grabbing’ extreme and overt presentations of a disorder, which for DID is NOT standard. The vast majority of patients with DID have covert symptoms. You’re not alone if you don’t present how you see DID represented in media or online. It is simply more interesting in Hollywood for them to show overt presentations because that sells better and tells a clearer story that an audience can track more easily. Unfortunately, this gives DID a more radical view in the public eye and makes many systems feel like they’re not normal. The average DID patient will not present in the way that most of the representations you see in media and online show.
It is normal to have one alter front most of the time unless a big trigger comes up. It is normal to have little to no communication. It is normal for things to progress slowly over time. It is normal for your alters to mask as you and not have extreme and different presentations. It is normal to see the media around DID and feel isolated and alone – many people try to conform to it, and it hurts their healing. Remember that media is media. It’s not real life.
Where to Go from Here
- Reading the rest of the content on the dissociative.cafe would be a good start. 🙂
- Finding a community online can be very validating, but be careful that it’s a healthy one.
- Finding your DID/OSDD elders and listening to them can be enlightening. Systems have successfully raised families, written books, and had impressive professional careers. A diagnosis doesn’t mean you’ll be on disability for the rest of your life.
- Remember, there is more to your life than DID/OSDD! Don’t dwell on this stuff 24/7. Hang out with friends and chosen family. Explore other interests. It’s OK. You will be OK.