Supporting a Loved One with DID/OSDD
/A lot of people want to know how to help friends and family understand DID/OSDD. In an effort to help with this sometimes challenging question, I’ve written a short essay for loved ones, to help them get a sense of what it’s like and how to offer support. You’ll find the essay below!
So what is Dissociative Identity Disorder, and how can you support people in your life with DID? How can you understand and be there for your loved ones who have DID or OSDD (an attenuated form of DID, which I’ll discuss later on)? Well, you may have heard of DID in the media as something that used to be called Multiple Personality Disorder. Unfortunately, the media can give some pretty distorted ideas of what DID is - the idea that people with DID are dangerous, for example (they’re no more likely to commit crimes than the rest of the population) or that DID is the same as schizophrenia - it’s completely different. So let’s talk a bit about what DID actually is and what kind of support you can offer your loved one.
So when we talk about DID, probably the first thing that comes to mind is somebody who has different, really distinct parts of the self, right? You might have heard them called alters, or ‘personalities,’ which is an out of use term for parts of self. And you might think of these parts as having their own sense of identity and their own way of interacting in the world. And we might think of this as what makes people with DID really different from someone who doesn’t have a dissociative disorder. But actually, we all have our own parts and the parts in DID are a natural extension of that. What do I mean by that?
Well, we’re actually all born with sort of a collection of parts of self that loosely organize around states like, ‘I’m hungry,’ or ‘I’m calm,’ or, ‘I’m sleepy.’ Even though at first the states are basically biological, with time they become more complex and get layered with emotion and behavior. These parts of us then, in healthy development, naturally get linked together (to varying degrees). But under conditions of trauma, they fail to adequately link (again, to varying degrees), and someone might end up with dissociated parts, or DID.
In the most basic terms, in the traumatic situation, especially if the situation is at the hands of a caregiver, the child is faced with the situation of “fright without solution”. When the child needs care and protection from a terrifying caregiver (usually but not always a primary caregiver like a parent), because the parent is the source of safety but also a source of fear, they can’t go to the parent for comfort unless they create two totally separate models of their parent: good mommy and bad mommy. And also, two totally separate models of themselves - let’s call them ‘calm me’ and ‘scared me’ - to go with good mommy and bad mommy. Then, if good mommy is present, the kid can go to good mommy and get comfort from her, as ‘calm me,’ but if bad mommy is present, they can retreat in fear as ‘scared me.’ These models have to stay separate, though, so they don’t mess with each other’s way of surviving. Scared me can’t know about calm me, because scared me has to get out of the way fast when mommy has that look on her face, and calm me can’t know about scared me, because calm me needs to hold mommy’s hand when mommy is in the mood to make dinner. So two separate parts are formed and someone is on the way to having DID.
But what happens if things go reasonably well for you? Don’t your parts - hungry, tired, calm - all get linked together into one, unitary self? Well, no, not exactly. If all goes well, you’re on your way to being a kid who can smoothly transition from state to state, and easily call on whichever part of yourself you need without having to think about it. You might think of the self-state you experience while supporting a friend, versus the state you are in while playing with your child, versus the state you are in while trying to get important information from your insurance company from a representative who seems completely unable or unwilling to understand what you want or how to help you.
They probably all feel like very different states, but, if things went more or less okay for you as a kid, you probably feel like more or less the same person when you are doing each activity. You also probably have access to more or less the same vocabulary, memories, and skills, and if needed, you probably can switch to operating out of one of the other states, even if it would be challenging for a few minutes. You might notice a few things that are different in each state. It’s probably harder to regulate your emotions in the last state, for example. You’ll also probably notice that while you might not lose skills from one state to another, in some self-states you’re distinctly stronger at particular skills. Likely the self that plays with your child is much better at reading your child, being silly, and coming up with creative games, and so on, than the one who talks to the insurance company. Likely the one who talks to the insurance company is much more, say, assertive, or good at patiently explaining complex problems.
So, it’s useful having parts and being able to call on whichever part you need to cope with the situation at hand. But what if your parts were really separate from each other? What if it was really hard to call on the one you needed?
What if, for example, you had a self that was excellent at taking care of your work and another self that was very good at being open and vulnerable but also carried a lot of your fear and anxiety. What if that second part of you got stuck out and you were unable to access your work self but you had to go to work anyway? Let’s take this a step further, then and imagine that the work self is the one who knows how to work, but your vulnerable self actually doesn’t have some of the key skills your work self has. Maybe your vulnerable self feels like a child. Maybe the vulnerable self doesn’t even know how to read, or to drive. Maybe your vulnerable self is terrified of being victimized by men. This vulnerable self can’t realistically function at work. But you can’t seem to access your work self, because you can’t fluidly move between selves, and you can’t share information between self-states to help your vulnerable self try to function at work either. This is a little bit of what it can be like to have DID, though many people with DID find very sophisticated ways to function at a very high level and to organize their system of parts, despite these challenges.
Okay, so what IS DID, exactly, and how can you best support the people in your life who have this experience?
DID is the term we use when we’re describing someone who has multiple self states that are fully dissociated from one another. What does that mean? That means each part of self has their own separate memory, knowledge, emotional experience, skill set, sensory experience, and sense of identity, from other parts. What does this look like?
Let’s say you have DID. You’re playing with your child, feeling playful, maybe even young - and the phone rings. It’s the insurance company. You need to talk to them about a claim. But the part that knows what the claim is about isn’t around. You don’t actually know what is amiss. Maybe you also don’t know how the plan works. That knowledge is dissociated. But also, you don’t know how to access the assertiveness or aggression that that other part draws on to interact effectively with the insurance company, because you have a totally different set of emotional responses to the world. You also don’t have access to the interpersonal skill set that that part uses to navigate complex calls like this effectively. Your skill set is completely different.
In fact, because you’re so separate, you have your own totally separate memory from the part that talks to the insurance company. You feel like a totally different person. You don’t know how to do any of the stuff that part does. You haven’t experienced anything that part experienced. You don’t know what that part thinks or feels or does. Who even is that part? Most people (that is, about 93-97% of us - the percentage of the population that doesn’t have DID or OSDD) don’t lose the sense that that part over there is me, another part of me. But for the person with DID, the felt experience is, “I have no control over what that part does or says, because that part is not part of me.”
An example: Someone describes to you their frustration that every time they try to take a particular action, their hand reaches over and hits their other hand. They say, “I don’t know who keeps doing it! I tried explaining to whoever it is that the hand isn’t for hitting, but they won’t stop doing it.” The visceral lived experience is that someone else who isn’t them is taking over their body, making them hit their hand, and will not respond to their request to stop doing it, because that someone is experienced as having a completely separate consciousness.
And that’s part of what makes DID so disorienting. Parts feel totally autonomous and separate. In fact, they are so separate that, when one part is what we refer to as ‘fronting’ that is, when they are in executive control, and then another part ‘switches’ into executive control, the person typically can’t remember what was happening to them when the other part was in charge. In other words, when someone with DID switches from part to part, they lose time.
So what is DID? A person with DID has at least two (often more) such highly separate parts, with their own sense of identity and personal autobiographical memory. They experience gaps in memory when switching between parts because of the degree of dissociation between their parts. What about OSDD? OSDD is just like DID, except that the person doesn’t experience memory gaps when they switch. However they still have highly separate parts with their own sense of identity and their own memories, just like in DID.
An important part of supporting people in your life with DID is simply to empathize with how disorienting this experience can be, to understand that they experience parts of themselves as “not me,” and that they often don’t remember a great deal of their day to day experience, including their conversations with you.
A few other useful things to know about what people with DID experience: their parts often (but not always) have different names, skills, and ages. If your loved one doesn’t remember or loses skill or capacity when switching to a different part, it can be your instinct to believe that this is about deception or resistance - the thinkings goes, “wait, I just said that to you,” or, “hey, you were just able to do that, how can you not do it now?” - but it is likely actually a result of switching to a different part who does not remember what happened or has different cognitive abilities and skills. You can ask your loved one if they feel comfortable with you asking about switches, or how they would like you to handle switches when they happen. Do they want you to ask if you notice a change? Would they like you to ask questions like, “I seem to remember us just talking about this, am I talking to a different part of you?” or “I have the feeling something is different, like the way we’re talking about this is different than it was a few minutes ago. Do you think I’m talking to a different part of you now?” Or would they prefer that you leave it to them to let you know if they’ve switched? Do they feel comfortable sharing which part is speaking with you, or does that feel private? Would they like you to ask who is fronting?
Secondly, it’s important to know that whoever you’re speaking to is a part in a system of parts, sort of like a member of a family, and that just like if you were at a family dinner, there are other family members who are just as important, even if they’re not fronting right now. Even if the other ‘family members’ aren’t fronting, they are still going to be affected by what you say. They may not be directly listening in (it’s possible they may be, though), but what you talk about will likely filter through in other, indirect ways. A part may share what was said later, may feel feelings about what was said without being able to hear the words, may hear about it through another part, or so on. Make sure you speak respectfully about all the parts, even if the part you’re talking to is having a problem with another of their parts, and communicate that you want to include everyone. Sometimes your loved one might be worried that you are not open to talking to their other parts, or may not always be clear about which part is involved in what they are talking about. You might think of this as being a little bit like when you’re not sure if someone else will be open to hearing about a particular part of your experience, or open to you being vulnerable, or when it’s hard to tell what you’re feeling and where it’s coming from, just taken to another level.
You can let your friend know that you’re open to talking to everyone in their system, and you can be curious about who wants to talk with you to let the ‘family’ know that you are interested in speaking to everyone, and to help make space for whoever most needs or wants to talk. For example, you can say, “I just wanted to check if there is anyone else who wants to talk to me about this too, because I don’t want to leave anyone out.” Or you can simply say, “I want you to know that I’m open to talking to everyone who wants to talk about this.” Always check in with your loved one to see if these questions feel supportive or intrusive, or if there are other ways they would like you to make space for all their parts.
It’s also helpful to remember that people with DID experience a lot of internal influence from their parts. They hear their parts talking to them, their parts can create intrusive visual images (or helpful ones), they communicate via bodily sensations, they can ‘remove’ experience, like making it hard to think, and so on. You can ask your loved one how they prefer you offer support when they have a lot going on inside. If they are hearing their parts talking to them or are getting confusing internal input, do they need a minute to just listen inside? Would they find it helpful for you to ask them questions about who is causing the inner experience and what that part is motivated by (is the part creating the experience worried about something that’s happening, trying to help the part that’s fronting, needing to know something from you?)? Does your friend prefer that you offer a distraction in that moment, or do something grounding with them?
The overall takeaway here is that you want to acknowledge your loved one’s parts and to talk to them. Let them know that you are interested in talking with all their parts and that you’re interested in knowing how all of them prefer to be supported with their experience. You also want to communicate that you understand that when they forget what’s just happened, or when there’s a change in skill, emotion, or knowledge, that you understand that you’re not being deceived, and that they’re not being ‘difficult’, but that there’s a profound change of state happening, and you’re interested in knowing about what just happened and who is here now, if they feel comfortable sharing. You want to convey curiosity and acceptance of all your loved one’s parts and be respectful of their experience of having DID/OSDD. They may love things about being plural (having alters), for example, or not be interested in ‘integrating’ (blending all the parts of self together into a single, subjectively experienced ‘I’), or they may feel very uncomfortable with talking about it, and want you to just keep your questions to yourself. Be curious. What are their goals in their healing process? What makes their system unique? And of course, what do they want and need most from you?
Thanks for protecting your confidentiality by keeping your comments anonymous!
