Social Worker Living Successfully with Dissociative Identity Disorder

I’m Here by Nancy-Lee Mauger

You Can Have Dissociative Identity Disorder and Thrive !

Are you shocked to hear that a mental health professional with Dissociative Identity Disorder (DID) is able to lead a productive life?

You need not be. Many individuals with DID live healthy and fulfilling lives (ISSTD, n.d.).

However, as a result of unfamiliarity and inaccurate portrayals of the mental illness across the different forms of media, not only do lay people have unfounded beliefs about individuals with DID but many mental health professionals lack the knowledge and/or experience to correctly diagnose (and/or treat) individuals with DID.

In fact, only about 6% of individuals with Dissociative Identity Disorder present with visibly alternate identities and mental health providers tend to misdiagnose them based upon the combination of symptoms they happen to present with simultaneously such as depression, panic attacks and substance abuse (ISSTD, 2011).

This post will provide you with the unique opportunity to get a better understanding of this mental illness via the perspective of someone who has DID and is a mental health provider. Janet Simon* is an experienced social worker with areas of expertise in mental health and disabilities.

So without further ado, Janet, how did you discover that you had DID? Was it scary?

I suffered from bouts of depression from the time I was about eleven years old but also recall having anxiety as far back as when I was five years old.  As a child, I was always getting in trouble for spacing out in class and had headaches from a very young age.

The symptoms of DID started expanding when I was in community college.  My roommate started telling me I was saying things that were really out of character for me – things I did not remember saying.

I suffered from severe headaches, depression, was very moody and had many unexplained illnesses.  I started going for counseling after one of my teachers was concerned I might be suicidal. I had no words to explain what I was feeling inside, just that I did not feel right.

I tried many therapists and nothing helped. At different times over the years, I was diagnosed with depression, bipolar disorder, somatization disorder, personality disorders, PTSD, and fibromyalgia.  Everything came to a head several years later when I was put on a cocktail of drugs to treat the most recent diagnosis at that time, ‘rapid-cycling bipolar type 2’.

I felt worse. I ended up attending an inpatient treatment program for depression. I was suicidal, confused, and was hearing something like a radio in my head.  I was fighting with my partner about decisions we had apparently made that I did not remember making.

The intensive treatment I received did not help. My relationship ended and I was couch surfing for a few months. I did not think I would ever be able to go back to work. Often, I would find myself on the bus and not know where I was going.  I would sometimes engage in self-harm and each time, I felt compelled, as though I was not in control and was watching myself.

My head was filled with extremely morbid images and I had many loud thoughts in my head. Though I was terrified and thought I was insane, I would never go back to the hospital after the experiences I had there. I went to see a social worker to help me find housing and help me decide if I should go on a disability pension.

Over the course of a few weeks, this social worker started asking me questions about what was happening with me. Did I have bouts of amnesia? Were there items in my possession that I did not remember buying? Did people ever accuse me of lying?

I now recognize these as coming from the DES, the Dissociative Experiences Scale.  She eventually told me she wondered if I had Multiple Personality Disorder; the change in name to Dissociative Identity Disorder was still very recent.

I thought she was crazy; I had seen Sybil and I was not like THAT!  She suggested that instead of being scared by the diagnosis, that I begin observing my feelings, to see how often they changed, and how intense they were.

Eventually I came to see that this diagnosis fit. I became willing to get to know myself and observe myself. Though I denied it at first, I had been aware of some of my parts for some time. I would refer to them as ‘the part of me that is depressed’, the part of me that is terrified, ‘the friendly one’, etc. As time went on, I recognized more of them.

Yes I was scared, but I was also relieved. Over the last few years, no therapist had ever known what to do with me. Once I had recognized them, I started working with the different aspects of myself. The more I accepted the situation and started working with it, instead of against it, the more balanced my life became.

I noticed you had an interview here about ‘Parts Psychology’. I want to reiterate that everyone has parts. Mine were just a bit more compartmentalized. It is true that similar work is done with people with DID, and it does, in fact, take a lot longer to treat. Different therapists have different approaches many based in Ego state therapy.

I have done intensive work with two therapists and am happy to say that the type of treatment I have received has permitted me not only to return to work but to also get off medication I did not need, go to university to obtain two degrees, and secure employment that I love. Depression is no longer a constant state of being. I am happy and live a normal, healthy life.

Growing Lollys by Nancy-Lee Mauger

You had to experience much pain and lose valuable time until receiving your correct diagnosis. What do you recommend mental health professionals watch out for so as to not to repeat this error with another DID client? 

My wish is that professionals not be so quick to jump to conclusions. Instead, observe with all your senses, listen to what is said and what is not said, and ask questions. Note the contradictions in behavior, the changes in your client from week to week.

How do they dress? Are they extremely confident one week and terrified the next? Do they ever look at you as if they don’t know you? Do they suddenly seem uncooperative when they have always been pleasant?  Does their voice change? Do they space out frequently during sessions?

They might also have quite a few physical complaints: headaches, dizziness, and stomachaches. These are just a few things you can spend time observing. There are other things mental health professionals can do and I can explain those later in our conversation.

What are your current DID symptoms? 

Interesting you would ask that because I don’t think of myself as currently having symptoms. The symptoms, according to my perspective, were what I experienced before I could explain it with the label of Dissociative Identity Disorder.

Now, I still have what others might call symptoms but to me, they are reactions to some sort of trigger.  When something happens, the parts inside might react.  An example might be that on some days, I feel anxiety.

When I spend time asking inside, I usually am able to find out what is causing the anxiety: a trigger; a memory, physical sensation or a current situation that reminds a part about a past event. The part is reacting because there is a conflict between the event I am experiencing and the frame of reference of that part.

I have to reframe the experience for the part by reminding it of the present moment. But these symptoms, when I tend to them quickly, will subside. They are not permanent.

I am aware that however I try to explain this; I will not do it justice. I will attempt to explain it simply. If you follow me to work, you might not notice anything about me. But if you come home with me, particularly after a stressful day when I am tired, you might catch me spacing out. That has to be my most common ‘symptom.’

When I am not aware of something happening inside and some parts are trying to get my attention, I may get a headache, get anxious, feel confused, feel dizzy or have many conflicting thoughts at once to the point where I can’t focus. Sometimes I feel many of my parts coming to the front at once to react to a certain situation. It feels like they are all in a revolving door and are afraid to step out. I have learned techniques to deal with all those symptoms.

I no longer have periods of amnesia. Ever since I have developed some co-consciousness and inner cooperation, I am always aware of what I am doing. It definitely was not always like that.  I have had people from my past show up and tell me about something we did together. I have no idea who they are. That can be a bit awkward.

Over the years, I have met a few other people with DID.  For some reason we tend to find each other; I suspect it is because we recognize it in each other. We all have a unique way of compartmentalizing our experiences and memories.  We have all split off in some way, usually to deal with trauma.

Though our experiences are similar, they can also be quite different depending on the treatment or lack of treatment each person has had.  Some people have not been fortunate enough to have proper treatment. They have been bounced around from professional to professional, or have been frequently hospitalized or treated for other illnesses.

As a result, they might not have acquired skills to live with their condition or work towards recovery. Their lives continue to be full of chaos, their parts are unaware of each other and they struggle with amnesia, depression and experiences they have a difficult time explaining.

Others have had good intervention and have become successful, balanced individuals. Others fall somewhere in between those two groups. I try not to compare myself but I do find myself extremely fortunate to have found help and been able to get out of the hell I was living. I wish I knew more people like me, who live a successful life despite living with DID.

Faces in Trees by Nancy-Lee Mauger

Would you say that you are integrated or that you have learned how to manage your different parts? 

I guess the answer to that depends on what your definition of integration is. When I worked with the first therapist, her goal for me was integration. I understood integration as working towards having one integrated personality. I did not know there was any other option.

I worked hard to make that happen and realized later on, when I started university and got triggered by stress and new memories, that I was not integrated; my parts were simply dormant or silent. Stress had caused a re-split and for a while it was quite frightening to have all the parts show up again, since I really believed they were gone.

I now have a very different understanding of integration. I have gotten to know all parts of myself. They work together to accomplish what I need to do. They all know each other and aware of each other. This is the co-consciousness I referred to earlier. They make decisions together and no part takes control without me knowing about it. That is how I now define integration, connecting of the dots so to speak: team work. The parts are no longer acting on their own without my knowledge.

People forget that the diagnosis criteria in the DSM is for diagnosis only, it does not describe the day-to-day life of a person living with DID who is working towards health. Since I no longer have the amnesia described in the diagnosis criteria, I would no longer receive the specific diagnosis of DID, but would fall under another type of dissociative disorder.

Am I cured? No, but I have recovered from the distress and severe symptoms that accompany DID.  But like any illness or condition, I need to have a treatment plan in order maintain wellbeing and deal with stress as it comes.

What is it like, on a day-to-day basis, to live with DID? 

Based on appearances, there is not much difference between you and me. Most people, unless they know me very well, are not aware of my switches. Some people might notice a shift in my mood, a look on my face, or a different speech pattern – which could easily be explained by being tired, by knowing more than one language, being excited about plans, or stressed with various life situations.

I have learned that in order to function reasonably flawlessly in the outside world (as opposed to my internal world) I have had to develop a strong routine. The more structured my life is, the less surprises there are. Surprises even if they are good, can be triggers and cause discomfort.

Structure reassures my various parts. They know what is going on, they know what to do and it becomes almost automatic. In terms of day-to-day self-care and balance, I have basically the same needs as anyone in any type of recovery: get enough sleep, eat well, and exercise.

To that, I add meditation or visualizations (inner meetings) to help my parts discuss, get organized and cooperate, mindfulness so all my parts are aware of the day and time, journal writing, relaxation techniques, and having enough time for myself and for my parts to occasionally just ‘be’ and tend to their needs without the stress of being around others.

I also have to prepare for the unexpected. My parts have worked together to develop strategies so that when one of them is stressed, anxious, scared, angry, there is a plan already in place to soothe, contain or express the emotion in an acceptable manner. I also have to prepare ahead for situations where there will be a lot of people or if I will be in a new situation.

It is a lot of work and there are times when I need to pass on activities with friends, or late nights because I know they will stress out the system. Stress can cause several days of discomfort, depression and anxiety. Inner communication is crucial to being well.

When I let go the routine or don’t take care of myself I am more vulnerable to having different parts reacting to stress and triggers because they don’t know what is going on.

I believe DID is really just a different way to perceive the world and make sense of it.  My brain processes feelings and information differently. I have learned techniques to organize that information so it does not overwhelm me. And if I do get overwhelmed, I have been taught ways to get every part back to a collaborative state.

Ok, let me think of an example. Sometimes you might hear a song that reminds you of an unpleasant or difficult time in your life. You might have a fleeting thought about the particular memory, you might feel a bit sad, but you are aware that it is a memory.

What happens with me is that the connection is not made consciously. I might suddenly feel very sad for what seems like no reason. The connection between the song and the memory went directly to the part who was involved in that event.

That part might feel they are reliving that event or, and at times, they feel they need to react to it. I am unaware except for the fact that I may suddenly feel sad, angry, depressed, or anxious. I need to find out what part is reacting and then find ways to process that information by soothing that part or helping it remember that the event is not happening now.

Different stimuli can affect the different parts differently as they all have their own memories. If I know I will be in a situation that might hold particular triggers for the various parts, I will prepare ahead of time to find ways to keep the parts from being aware of the outside world.

It can also happen with positive memories. They might trigger the younger parts who will feel happy and giggly and have a sudden urge to drink chocolate milk. Yet if you asked why I suddenly craved a hotdog and chocolate milk when I normally prefer a semi-vegetarian diet, I won’t be able to explain it right away.

How do you manage your DID while working with your clients? 

Part of my recovery has been getting to know my parts, and figuring out their strengths.  There are also rules that all the parts need to follow. I wake up early in the morning and see that extra time as my time to get organized. Interestingly enough, work is the place where I am most grounded and efficient and the least likely to ‘switch.’

I visualize my morning process a bit like taking many different coins and putting them in a coin sorter.  Only the ‘work coins’ go to work.  The inner visualization helps keep the other parts in the background, and not at work.

I would need a lot more time to explain this fully, but I think you get the picture. Because there is good inner communication, there is respect from the other parts. There is no interference or sabotage from the other parts.

My work part is very strong and focused and it is rare that outside events or situations will trigger me. The work part is professional, efficient and knows what to do. I can usually feel if my other parts are close. I have some strategies to speak to those inside in those moments to remind them to step back.

I also use some self-hypnosis techniques to help calm any emotions that might be taking over. Usually, feelings are contained until I find myself alone, away from clients. If there is some discomfort, I usually take some time alone to check in and can usually get things settled inside fairly quickly.

I have more switches when I am alone at home because I let myself relax after work. I have less rules and responsibilities and can let the parts ‘be.’

Bloomin’ by Nancy-Lee Mauger

In terms of origin, an individual’s parts originally developed to help a child survive her trauma. Essentially, a part contained (witnessed/experienced) what the rest of the child could not. 

What role do the parts play for the adult (once the trauma has ceased – is it still to try to protect the adult from remembering the details of the trauma?), and what reason/role does the switching play?

That is a very big question with a lot of sub-questions. I want to clarify that different parts have different roles. Yes, some were developed to experience the trauma but other parts have developed as chameleons, comedians to shift the focus away from the pain or the situation, protectors, caregivers, obedient children, some hold fear, others pain, etc.

Over the years, some of the parts have changed and grown as they have learned they no longer need the behaviors of the past to be safe. That is the biggest part of recovery: rescuing the parts from the past so they can experience the present in a new way. Some of my parts still get caught up in emotions from the past, but they are not trying to protect me necessarily.

I have done enough work that I am aware of most of the trauma. The parts are all aware of each other; they are learning new ways of being, letting go of what is no longer useful. As therapy continues, the roles change as do the goals. It takes a long time to get to the point where all the parts are ready to face the trauma.

The groundwork needs to be set so that they are aware of the present instead of trapped in the past, and feel safe enough with each other and the therapist to know they are remembering and not re-living. There are many skills that are learned along the way to contain painful memories and feelings and work towards collaboration and communication. Once that is solid, then the parts can work more deeply to heal difficult memories.

Switching is the term used for when different parts are coming to the front. Sometimes they are reacting to triggers and other times they are trying to help me. Sometimes I am just very tired and another part will want to take over to help.

Mostly, I feel the switches coming on but I don’t always allow them. I will allow some of them to come out if it is safe: when I am alone or when I am with my therapist and maybe with one close friend. Other parts I will allow in the front because I know people will not notice the change.

For the most part, I will acknowledge the part internally and ask it to step back if it is not appropriate or safe for it to be there. Some parts can stay close and watch and can influence me without ‘taking over.’ That is how it is for me most of the time. I can feel them or hear their thoughts but they rarely need to come out. They function with me from the inside.

What are some of the challenges of having DID?

Sometimes the different parts disagree about what I should do. Many people know what it’s like to feel pulled in different directions or to feel ambivalent at times. Multiply that in terms of frequency and intensity.

Sometimes I don’t recognize the ambivalence right away. I feel anxious, uncomfortable, out of sorts until I check inside and ask how the different parts are doing or how they feel about a certain situation. Sometimes I need to do some education with the younger parts, give them proof that things have changed, that they will be safe, that they do not have to participate in whatever the plan is.

It can be tiring. But doing the check in does work; even though I admit, after several years, I still struggle with remembering to do that regularly. I still have denial and not to be funny but, part of me does not want to accept that I have DID.

I would say the biggest challenge is the stigma related to DID. I am using a pen name for this interview because I know that despite the evidence and research, there are still many health professionals who do not believe in DID. Being out about my situation could mean the end of my job.

There has been a great deal of awareness done in the last few years to reduce the stigma of mental illness. This is not the case with DID. No one talks about it, and if they do, it is to say it does not exist. Professionals are allowed to write newspaper articles, books, go on television and the radio to say that this is not a real condition; that we are making it up; that our therapists have created this. Would we say that about someone with schizophrenia?

All I know is that, the professional help I was given prior to the DID diagnosis did not help. I was at the brink of suicide and thought my life would never get any better.  I was abused by the mental health system; prescribed medication I did not need, and was treated by professionals who did not listen to me. Now, I have a wonderful life but have to hide what is making me better. I have to hide the DID and not talk about it. I hate hiding.  I wish I could be out.

Also because there is so little understanding about DID and so many misconceptions, I also am very careful about confiding in friends. Very few of my friends know and if they do, we rarely talk about it. Some people I have confided in have changed the way they treated me once they knew. They were constantly trying to figure out ‘whom’ they were talking to. I have let go of those people. I felt like a sideshow around them.

I am me, the same as I was before people knew of the diagnosis. Treat me like you would anyone else. If you notice something, you can ask if I am OK, or if I am tired or stressed but don’t wait for some part to jump out and identify itself to you. I will talk more about this when we talk about professionals.

What are some of the silver linings to having DID?

I could make a joke and say that I am never alone. In a way, it is true. The biggest gift I have received from DID is that I have learned to know myself in a way that many people don’t. I have become friends with the different aspects of myself.

I have gained patience and self-compassion towards my anxiety, my fears, and my anger. I have learned to trust and appreciate my strengths, my inner teachers and negotiators.  I was taught ways to cope with my life that I would not have otherwise.

And having different parts can be useful. I am generally very introverted but there are times when I have to socialize, even if I don’t want to. One of my parts is very social and friendly. That is one part I gladly let out. She can attend all the stuff that freaks me out. People just find me a bit more chatty and friendly.

I am also aware of my younger parts and can be appreciative of the simple things in life; puddles, doing crafts, appreciating nature. Many people go through life without acknowledging or accepting their child-like wonder of the world. Mine is with me all the time.

What do you wish that mental health and/or medical professionals did differently with people with DID ?

Many professionals don’t want to treat people with DID because it takes a long time to treat.  There is no magic pill. I know individuals with DID who are not getting the proper kind of treatment because their doctor does not believe in DID or because they cannot afford private therapy with a qualified professional.

Please don’t work with individuals who have DID if you don’t know what you are doing.  I have come across therapists who were very excited to learn that I had DID. They thought it would be fun. They asked a lot of questions like: how many parts do you have? What are their names? Do you have any violent ones?

They were fascinated by the condition rather than the person sitting in their office. They had ideas of how they wanted to approach it, but they knew nothing about DID or how to treat it. You can make things worse if you are untrained.

Please, if you don’t know what you are doing, take a course, and ask for help from someone who is trained to work with someone with DID.  Don’t practice on us. Most people with DID have been diagnosed with about six other conditions prior to DID. We are fearful and vulnerable. We have trust issues. Be gentle.

If you don’t understand what is going on with your client and are unsure of his/her diagnosis, get some guidance. If you are uncomfortable, seek help or refer to someone else. Don’t pretend you know what you are talking about if you don’t.

When I changed universities for my graduate studies, I approached the center for students with disabilities because I have learning disabilities.  I thought I should let someone know about the DID in case I ran into difficulties like I did during my undergrad.

I spoke to a psychologist and when I told her I had DID, she immediately wanted to refer me to the early psychosis program at the hospital. I am not psychotic! That situation made it very clear that it is often not safe to disclose my condition.

The most important thing you can do is to listen to your client. And go where they go.  If there is a change in tone, voice, feeling, ask questions.

What would you like mental health and/or medical professionals to know about individuals with DID?

People who live with DID are not like what you have seen on TV. Chances are they will never commit a violent crime while under the influence of another part, or use DID as a defense in court. You might not be able to diagnose your client as having DID if you wait for one of their alternate personalities to just show up in front of you so you can tick of the list of criteria from the DSM.

It has been my experience that my parts just try to blend in. They don’t want to be noticed. They show up to do what another part cannot do and they usually don’t make a show out of it. My parts did not show up to talk to my therapist until they knew her and knew they could trust her.

Having DID is not a party trick. We will not sit with you and switch from part to part for your entertainment.

Don’t judge us based on myths about DID.  If you choose to work with people with DID, it is a long process. You will need to be patient, and be willing to repeat the same thing many times. It can sometimes take a while for all the parts to learn something or hear it.

In my opinion, DID is one of the most treatable mental health conditions, given the right tools. It is time-consuming but you can get results and see progress. And people with DID are usually very intelligent, creative, resilient and adaptable. Believe in them. They can live successful productive lives. I am glad someone believed in me!

Thanks so much, Janet, for taking the time to provide us with your personal view of DID!

What are you thoughts about DID and/or the issues Janet raised vis a vis the mental health community? 

*Janet Simon is the social worker’s pseudonym; she would have loved to have been able to disclose her real name but feared she may suffer negative professional repercussions.

You May Also Enjoy:
Dissociation Blog Showcase at Sarah E. Olson’s Third of a Lifetime blog
PODs – Positive Outcomes for Dissociative Survivors
Trauma and Dissociation Wiki

Note re artwork: All the beautiful watercolor paintings included in this post have been published with the kind permission of the artist, Nancy-Lee Mauger. 
Nancy-Lee Mauger is a female artist who was diagnosed with DID in 2010. She uses art on a daily basis to help her navigate and cope with her mental illness. To purchase her art, you may contact her through https://www.facebook.com/NLMauger or paintingsilove.com.

References:
ISSTD. (n.d.). Dissociation & complex trauma in the media.
ISSTD. (2011). Guidelines for treating dissociative identity disorder in adults, Third revision: Summary version. Journal of Trauma & Dissociation.

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