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March 11, 2019

Living with and Learning about Dissociative Identity Disorder: Journey of Healing

Dissociative Identity Disorder (DID) is not a personality disorder, it’s a trauma disorder. It can be useful to think of DID as an extreme form of Complex-PTSD. I was officially diagnosed with DID 3 years ago and everything made a lot more sense with this diagnosis but it’s still something I’m working to accept and in the process learning about how I and all of my parts function. Research, writing and connecting with others have always been a big part of my healing process even before this diagnosis. There is not that much out there written by people who have DID and there is so much misinformation, especially in the entertainment world, so I wanted to share some of what I understand about DID and my own experiences with it.

A person with DID is not multiple people sharing one body, even if it can feel like that at times. People with DID do not have multiple personalities and they are not less than a single personality. Instead they have multiple identity states that are dissociated from each other to varying degrees.

 

DID is caused by trauma in childhood, which can include physical, emotional (e.g. neglect) and/or sexual abuse. According to Putnam et al. (1986), 97% of patients with DID report a history of abuse. DID can also be caused by experiencing a natural disaster, chronic illnesses and/or medical procedures or living in a war-torn country. What all patients with DID have in common is histories of recurring, inescapable, severe and often life-threatening traumas that they had no power over. Children raised by frightening and unpredictable parents, where disorganized attachment is present, are more prone to using dissociation as a tactic to escape internally. There is also some research that indicates that highly intelligent and imaginative children are also more likely to dissociate and split from themselves as an unconscious act of self-preservation, when the identity of a person is still being formed. Essentially a child in an abusive situation has no recourse often but to go inside themselves for help and because the brain is still forming at the age, parts of a personality can split off. This way a child can have traumatic things happen to them and yet still continue to manage in life by not carrying all of that with them. Even if a child has memories of abuse, they may think of it as being “not me” and therefore be able to push it aside in order to survive. The burden of knowing what is happening to them and realizing they have no escape from it would be too much to endure. DID is thought to form before the age of nine as a creative survival mechanism. It is common for a person with DID to continue to have parts form throughout their life, sometimes without their knowledge, because splitting off becomes a habitual mechanism of the brain that continues after childhood, particularly in response to stress or triggers.

Like anything else, people experience DID on a spectrum. Some people may struggle with it immensely and have great difficulty functioning in the world. Some people may have DID and be highly functional. More often than not, people with DID will be functional most of the time but experience episodes in their life when things feel too distressing and chaotic and will find they need more support during those times. In times of high stress, transitions or upheaval, for example, aspects of DID can feel more unmanageable especially when combined with PTSD symptoms. Every person with DID has their unique experience with it, and responds and manages their symptoms in their own way. For anyone with DID, trying to stay in the present is a big part of the struggle.

You can read the full clinical definition of DID in the DSM V, but essentially a person with DID is characterized as having two or more distinct identities or personality states, each with their own way of being, perceiving, relating, thinking, feeling etc. Different parts typically have access to different memories that when pieced together would give a better sense of a person’s life, as such parts often have different emotional states and even feel different in the body (or experience the body differently). A person with DID will often describes themselves as feeling fragmented due to the discontinuity in their sense of self and the variations they may experience in affect, behavior, memory, perception, cognition, mannerisms, sensory-motor functioning, physical health etc..

People with DID experience amnesia to varying degrees, usually more extensively around traumatic events but also with recalling aspects of their daily life. It’s very common for people with DID to “lose time” and/or have a complex relationship with time, where it can sometimes feel like time is standing still and just as suddenly hours have gone by in what feels like seconds. Gaps in memory and recall are experienced by everyone with DID, and are a direct result of trauma as the brain needed to compartmentalize and repress experiences which were too much for one person to deal with.

Symptoms of DID can be very distressing for the person experiencing them, and can make it very challenging to function in life. Even when someone is coping well, DID is mentally, emotionally and physically exhausting because there is just so much to manage on top of the regular challenges and responsibilities of life.

The vast majority of  people with DID all have Complex PTSD, as DID is itself an extreme response to trauma. “Cptsd is a more severe form of Post-traumatic stress disorder. It is delineated from this better known trauma syndrome by five of its most common and troublesome features: emotional flashbacks, toxic shame, self-abandonment, a vicious inner critic and social anxiety.” (Pete Walker, Complex PTSD: From Surviving to Thriving, p. 3) When people think about PTSD they often think about flashbacks and panic attacks but there is much more involved and it can take a really toll on the body and mind. Hyper-vigilance, sleep disturbances, irritability, depression, poor concentration, sudden onset of intense emotions, hallucinations, disorientation, confusion, foreshortened future (not believing they will live long/can’t believe they are still alive, inability to enjoy life, believing they can’t experience love, feeling unsafe, body dysmorphia, depersonalization, feeling isolated, nausea, headaches, chronic fatigue, and many others. Suzette Boon et. al in Coping with Trauma-Related Dissociation, pp. 44-45, helpfully breakdowns C-PTSD into 6 symptom clusters: 1) Alterations in Regulation of Affect (Emotion) and Impulses, 2) Changes in Attention and Consciousness, 3) Changes in the Perception of Self, 4) Changes in Relationships with others, 5) Somatic (Physical) Symptoms, and 6) Changes in Meaning. To see a longer list of symptoms you can look to some of the inventories of C-PTSD symptoms that are out there.

Ask anyone what it feels like to have DID and you will probably hear words such as exhausting, frustrating, confusing, lonely, terrifying, distressing, painful etc. come up. People with DID often express concern that they are going crazy, that it can’t be real, that they must be faking it because it can be so hard to accept the reality of DID and the trauma that caused it. On the flip side, people with DID also will sometimes express gratitude for it because it protected them. How someone feels about their DID shifts and changes over time, even from one minute to the next.

More than 70% of people with DID attempt suicide at least once in their life. (https://www.healthyplace.com./blogs/dissociativeliving/2016/09/suicide-risk-in-dissociative-identity-disorder) That is a unsettling statistic. Contributing factors may include: painful memories of abuse, difficulty functioning in the world, feeling alone and isolated from everyone, being overwhelmed by parts, not being seen or understood, constantly feeling flooded by intense emotions, eating disorders and/or substance abuse issues and many other issues. Lack of access to good professional help no doubt plays a role in this as well, as navigating trauma and DID on one’s own is treacherous. Perhaps worse still is being misdiagnosed and/or being treated by someone who does not have the capacity to help. A great harm that many people with DID experience is running up against mental and medical health professionals who do not understand or might not even believe in DID. This can cause serious re-traumatization as many people likely survived traumas that no one knew about, validated, believed in, accepted and/or protected them from. There are very few psychiatric hospitals in the USA that offer specialized treatment for those struggling with Complex PTSD and DID. Many survivors of trauma need inpatient care at least once during the course of their life, often several times to deal with issues as they arise, to re-stabilize, to have a safe place to be as they confront trauma memories and to learn new coping strategies. Getting help is often viewed as something shameful (or the person with DID feels shame about it) but in reality getting help is brave and shows great resolve to heal.

DID isn’t schizophrenia or borderline personality but professionals unfamiliar with DID may misdiagnose someone with those. People with DID do *hear* voices, but it’s an internal kind of hearing. One way to think about it is to consider how many people without DID might have conversations in their own head when working out a problem or something. Or people with eating disorders often have a healthy voice/part and an eating disorder voice/part at war with each other. With DID it’s sort of similar but far more complex and intense, with many different parts of self speaking up, often in contradiction to one another and frequently cut off from one another. It’s like being walled off from aspects of your self and also having very loud and varied dialogues happening, often in opposition to one another.

A person with DID has a fragmented sense of self and experiences having parts of self that feel quite distinct from one another. Parts (of self) are also sometimes referred to as alters, self-states, ego-states, dissociative identity, aspects of personality etc. Most frequently I hear people with DID either say parts or alters. Parts make up a system, which together form the whole person and impact how they function. Parts can vary in age, gender, outlook, mannerisms, abilities, roles, attitudes, psychobiological responses (e.g. allergies, medication responses, immune function etc.), perception, and many other variables. Parts often hold different memories, keeping the person from experiencing everything all at once, both the good and the bad. Parts also typically have different awareness levels of one another. Although all parts exist in the same body, they may view and experience the body very differently. A child part, for example, might experience the body as being small, weak and vulnerable, while a protector may feel they are exploding out of the body and taking over a space and a sexualized part might feel that certain parts of their body are very noticeable and constantly feel objectified. Everyone is different. While every person with DID has a unique system, there are commonalities in types of parts across systems such as: a host part that fronts to function in the world (this part(s) typically doesn’t have access to all the trauma memories and emotions and are better able to deal with everyday things, such as going to work, household responsibilities), various child parts (some which hold the earliest trauma memories), protector parts (who look out for danger and depend the system), a crying baby part (who is incapable of being soothed), persecutor parts (e.g. intensely critical of self), teen part, sexual part (because intimacy is so triggering for other parts due to past abuse, sexual impulses might get contained into one part), suicidal part (a part who holds much of the pain but might not know why and therefore experiences constant suicide ideation), a part that is the opposite sex of the body, and an internal self-help part. It may sound strange but people with DID can also have animal parts, fairy-tale/mystical creature parts, or even inanimate objects as parts. It makes a lot of sense when you think about it given that DID is a coping mechanism established in childhood. Children have wonderfully creative imaginations and this factors into the formation of DID. A child who felt powerless, for example, might imagine they are a large boulder during abuse and after that the boulder gets absorbed into their sub-conscious and can come out when needed. Or maybe a family dog received more affection than a child, so the child creates a dog in their mind who is able to receive all the love and comfort they can’t seem to get in human form. There are many variations and possibilities, and really depends on what a child needed, and as the body of someone with DID ages more parts might show up to deal with other circumstances. It’s important to realize that some parts might be stuck in trauma time and need to be oriented to the present.

 

When a part (or parts) take control of the body it’s referred to as fronting, i.e. one part fronts in order to manage something while the others recede or stay hidden inside. When parts take over it’s called switching. Usually now I’m able to tell if I’m going to switch, even if I can’t do anything to stop it, but not always. I often say “I don’t feel well” if I am going to switch, my head usually hurts, my vision can get cloudy, I feel disoriented and how I feel in my body changes rapidly. It can feel very jarring even if externally the switch seems subtle or invisible. Parts switch out depending on the needs of the person with DID along with the specific environment or circumstances they find themselves in. People often switch in response to stress or being triggered, either positively (e.g. seeing a toy might trigger out a younger part) or negatively (e.g. a disappointing outcome might trigger out a persecutor part). Some people rapidly cycle through parts often because they are in a near constant state of overwhelm due to C-PTSD symptoms. I tend to experience rapid cycling when I spend too much time alone, if trauma memories are surfacing or if I’m in an environment where I feel a loss of control (e.g. inpatient). In recent months I’ve been able to be more co-conscious with parts which means I have access to their experiences, sometimes even being there with them when they are fronting. At times it even feels like two or more parts have blended together in order to manage something. I still find it odd, to have the awareness but still feel like someone has taken control of my body or to feel like I watching my body from above, but I know the shared knowledge is an important step forward.

 

DID is not as rare as has been commonly thought. DID is a coping mechanism that manifests in childhood and can often be quite subtle. It is very possible for people to have DID and not know it, often because other symptoms are more noticeable but also because DID originated as a mechanism to protect an individual from experiencing and knowing certain things. Elizabeth Howell has called DID “a disorder of hiddenness” (Howell, EF. Understanding and Treating Dissociative Identity Disorder, 2011.), as many people with DID attempt to hide their symptoms and way of being from others (and even themselves), afraid that people will think they are crazy or not believe them. Additionally, DID is frequently misdiagnosed. People with DID can spend many years in the mental health system before being correctly diagnosed.

Most people with DID aren’t diagnosed until well into adulthood, late 30s/early 40s and onwards. This is for several reasons. Partly it’s because people are usually in the mental health system awhile before being diagnosed, often entering it for specific reasons such as depression, insomnia, anxiety, eating disturbances etc. People also get misdiagnosed a lot or specific symptoms draw attention away from a diagnosis of DID because they are looked at separately. DID is almost never on anyone’s radar. I also believe that people don’t really start becoming aware of their DID symptoms until they are in a safe enough place in life, which means they are out on their own, away from the environments and people in which DID formed. The same is often true about memories…they really don’t start emerging until someone is in a place where they are better able to tolerate those memories (this is not to say that trauma memories are well tolerated though as they have the potential to make it really hard for someone to function). The dissociation of symptoms, experiences and memories keeps people safe when they are not in a place to do anything about them or get away from abusers, but the body and brain want to heal and eventually parts of self and memories will surface and demand to be worked on.

There isn’t a medication that can cure DID. In fact, medication for people with DID can be very tricky as different parts might react differently, physically and/or emotionally, to any medications prescribed. Additionally, if medication was part of the abuse, parts will often do everything they can to avoid taking it, seeing it as something threatening. Medication, however, can be useful for treating symptoms that often accompany DID, such as depression, insomnia, anxiety etc. Treatment providers may have to get creative in their treatment approach though as things can be very complex, for example the depression that someone with DID has likely stems from trauma and might not be chemical/biologically based and therefore traditional medications for depression might not work.

The most effective treatment approach for people with DID is long term (or rather life-long) psychotherapy. It is generally recommended that people with DID see their therapist 3 times a week if possible or at the very least consistently. Longer sessions, up to 90 minutes or more, are often required. Therapeutic techniques used with DID patients are very eclectic and can include: cognitive behavioral therapy, EMDR (eye movement desensitization and reprocessing, although a modified version is often needed to avoid flooding and causing severe dissociation), somatic work, dialectical behavior therapy, art therapy, structured journaling, bodywork and other modalities are often incorporated into therapy. A psychiatrist is usually part of the treatment team as well, particularly if any medication is needed over the course of treatment. A psychiatrist can also give specific screening tools to someone who is experiencing symptoms of DID. The Dissociative Experiences Scale looks at psychological symptoms while the Somatoform Dissociation Questionnaire looks at physical experiences. Both use self-reporting and are scored by the psychiatrist. The Structured Clinical Interview for Dissociative Disorders is used by clinicians to assess dissociative symptoms and disorders and is given in a face-to-face interview. It can be helpful for the therapist who is primarily overseeing the treatment of a patient to work on a team so they can consult and have support as needed.

 

Many people assume that treatment of trauma requires a lot of talking about traumatic experiences but this isn’t the reality, and in the case of DID patients it could actually be harmful to do so. In general, the focus is on safety, stabilization, grounding/containment and symptom reduction. Work is also done on attachment and abandonment issues which are common with trauma survivors. Getting healthy coping skills on board is also essential. If a person has maladaptive coping behaviors that are affecting their wellbeing, e.g. an eating disorder, self-harm, substance abuse issues, those need to be stabilized first before much work can be done around dealing with the trauma underlying everything. When trauma is processed in treatment, it is done slowly and cautiously to reduce the risk of destabilization or relapse. It’s not that traumatic memories or body memories aren’t acknowledged or dealt with, but there isn’t a need to go into great detail about things and to talk about every single that happened to someone in order to heal.

People with DID often have chronic health issues and autoimmune conditions (this is true for trauma survivors in general) so it’s important to have trusted medical professionals to manage things such as gastrointestinal disturbances, rheumatoid arthritis, allergies, migraines, thyroid problems etc.

The goals of treatment for DID are many but essentially boils down to aiming for functional multiplicity or the integration of parts into a whole. These two outcomes are often a personal choice for people with DID, but also for those with many parts integration might not be possible. There are people with DID who find the very concept of integration to be triggering, feeling as though with it comes the death of parts of self. Parts have helped someone survive and be in the world, and in some cases can feel like trusted companions and even family, so it’s not surprising that integration might feel wrong to some. Integration isn’t about parts going away though, it’s about fully embracing them as your own. They are still there but they just function in a more unified way. Still, the idea of “losing” distinct parts can feel very distressing. Functional multiplicity also involves acceptance of all parts, good internal communication between parts and helping parts to work as a team. Parts are still felt to be distinct but there is less dissociation from one another so that it’s possible to manage more cohesively. Both outcomes revolve around acceptance and understanding of parts of self. I’m not really sure of where I am on this path of healing, whether I’ll integrate or work towards functional multiplicity, and I don’t feel it’s a decision that can really be made yet. I feel that whatever is right for my system will happen. I do know that the more awareness and internal communication I have, the more choices I have and the better I am able to respond to things in my life.

 

DID is not a fantasy or a way to get attention. It is not something anyone would benefit from making up or faking. I have experienced someone who was faking DID just as I was trying to come to terms with my diagnosis and although I found it very confusing (as I was having trouble accepting that I had DID) I did not feel angry towards them but rather accepted that they clearly needed help and were experiencing their own kind of pain. DID can often be a heavy and painful burden, and everyone who has it at one time or another struggles with their diagnosis even when they can’t really deny the truth of it. I personally wouldn’t wish it on anyone. The stigma around DID is still very strong and that stigma can be quite damaging to people who have already endured intense trauma. For someone with DID to have their experiences brushed aside can feel re-traumatizing, particularly after already living through trauma for which no help was available and/or having their traumas silenced or invalidated. However, with more people speaking up about it in recent years and as more research is done, I believe that things are improving slowly and I have hope that one day there will be more public understanding and acceptance around it.

 

Over the last decade, there has been more brain imaging studies done to better understand DID and see how it looks in the brain. The tests carried out so far, though typically small samples, do indicate that there are differences in the brain (e.g. regional cerebral blood flow) of someone with DID and without DID and that even simulated DID (for the purposes of testing) looks different than what real DID looks like. In addition, parts show up distinctly from one another on a fmri scan (see episode 6 from The Many Sides of Jane, on A&E, for the most recent example of this).

I’m still learning about DID and how my parts function but I am very grateful to be alive, to be healing, to have supportive people in my life and to feel safe enough to be able to talk about all of this openly. We need to start acknowledging that child abuse is more pervasive in our world than we’d care to think, and the impact of trauma is very real and extensive. The more all of us can understand, accept, connect with and care for one another, the more powerful we become to create positive changes in this world.

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Jackie Armstrong

Passionate about many things in life but especially the ability to live authentically, connect with others, speak my truth, express gratitude and to tear up stigma around mental health issues.