A Patient’s View of the Challenges and Blessings of Her Dissociative Disorder



 

Bonnie Armstrong, MA, ACC1,2

Perm J 2020;24:19.094 [Full Citation]

https://doi.org/10.7812/TPP/19.094
E-pub: 11/15/2019

A PATIENT'S VOICE

ABSTRACT

People who live with dissociative disorders and a history of childhood trauma are less rare than commonly thought and can be challenging for unfamiliar medical practitioners. Many of us present as apparently normal people and live full and satisfying lives. But under the stress of a medical situation, we can become unpredictable. On the basis of my own experiences, I offer, in this article, some instructive anecdotes and tips for health care practitioners on how to work with patients with a trauma-related diagnosis such as a dissociative disorder.

 

 

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A remarkable coping mechanism helped me survive parts of my childhood, and I find I need to give a heads-up about it to anyone who treats me in a medical setting. For you healers, it can be quite surprising, even alarming, to be working with your best compassionate professionalism on an apparently normal, well-educated, older woman and suddenly watch her affect, voice, and symptoms morph into a 6 year old who wants to play games with your equipment—or a terrified 11 year old who is sure you want to perform painful medical experiments on her. Sometimes, as happened in a recent Emergency Department (ED) visit, even when I manage to warn the staff about my dissociative disorder, the information lands in the chart without leading to understanding, opening the possibility of dangerous consequences. Not that we who live with the condition are inherently dangerous, but we can be unpredictable.

In my situation, a young ED physician with big round glasses and hair neatly pulled back began efficiently to examine me when I showed up with dangerously high blood pressure.

“I need to tell you that I have a dissociative disorder,” I said, having trouble getting the words to fit together. “I already told the nurse. Are you familiar with what that is?”

“Well, why don’t you tell me what it means to you?” I wondered why she’d ask me to explain it when I felt so weird I could hardly think? She must not know what it is. Or maybe she’s testing me.

“It’s a condition that sometimes develops in response to traumatic things that happen in childhood. They used to call it multiple personality disorder. My psyche created a bunch of different parts—some people call them alters [dissociative identities]—to deal with the trauma, and now that I am healing, they sometimes come forward, especially if there is a lot of stress, like right now. So, I just don’t want you to be surprised if you suddenly are confronted with a 6 year old here during your examination.” Her eyes had glazed over. It had taken a lot of effort to get that many words strung into understandable sentences, and I didn’t have the energy to try any harder to penetrate her indifference.

I was so glad that the paramedics who brought me in had responded more knowledgeably. During a meeting with people I knew well, one of my internal alters had come forward to report with some concern that the body was not well and they should take me to my physician. Feeling ill, but still in control, she then laid the body we share down on the floor trying to find comfort. When my friends saw me on the floor, they decided to call paramedics instead. But, as the ambulance arrived, my system exploded with a whole new level of agitation. My friends told the paramedic team about my dissociative disorder and insisted that I not be restrained on the gurney, knowing that somewhere deep inside, for reasons they didn’t fully understand, I was terrified of being strapped onto the bed.

The paramedics listened. They helped me to sit on their gurney and gently lifted it into the back of the truck so they could assess what was wrong. The numbers didn’t mean much to my dissociated and panicked mind, but the concern on the face of the EMT [emergency medical technician] spoke volumes when his colleague reported, “222 over 124.” And we were off to the hospital, with only a gentle seatbelt and the kindness of these well-trained men holding me. They spoke reassuringly to the frightened 11 year old who knew from experience something awful was about to happen and to the 70-something woman whose health was at risk, accepting without comment that both were housed in the same body.

In the ED, the physician continued to examine what she could see: Blood pressure coming down; so far, other systems appearing normal. She began her neurologic examination by having me touch my nose with my finger. Then she held her finger off to the left side and asked me to touch it. Now she held her finger way over to the right side and said to touch it there. This was fun! As soon as it appeared that the young woman with glasses wanted to play a game, 6-year-old Jane was happy to oblige; the old lady was taking it all much too seriously! Besides, Jane could feel more fear welling up inside, and it was her job to deflect fear when she could. Seamlessly, without warning, Jane came forward to take control of the body so that she could play, laugh, and giggle with her new friend. The adult Big Bonnie melted into the background, vaguely aware, from somewhere behind the eyes, of what was happening “out there” but unable to influence it.

“Hi!” Jane bubbled with a big smile at the lady who started the game. “This is fun. I can touch it over here and over there,” she demonstrated with a giggle. With her signature bright-eyed joy, head cocked slightly to the right, Jane talked delightedly and continued the game. But instead of playing along, the lady quickly turned and left the room, taking the nurse with her. Maybe she wanted to play a different game. As Jane squirmed in the bed, she found some little round plastic sticky things and invented another fun game clicking them together and pulling them apart. There were machines making funny noises and lots of lights and cool things to look at. Luckily, she didn’t try to play with any of them or the tube and needle in her arm. She wanted to play with the people who had left her alone. After a while, with the internal fear lessened and the external people thoroughly distracted from doing anything harmful, Jane went back inside and let the old lady be there.

IMPACT OF CHILDHOOD TRAUMA ON THE BODY

As Van der Kolk1 documents in The Body Keeps the Score, people with dissociative disorders—as well as others with trauma histories—often present with confusing symptoms and face the danger of misdiagnosis and/or inappropriate treatment. This is particularly true before proper diagnosis (which in the case of dissociative disorders can take 10 years or more) but also continues thereafter.

The landmark Kaiser Permanente-Centers for Disease Control and Prevention Adverse Childhood Experiences (ACEs) Study2 showed the impact of ACEs on adult health and spurred more research into childhood trauma, which is a precursor to most dissociative disorders. This work is bringing a much-needed, trauma-informed lens to the practice of medicine in this country and beyond. Burke Harris,3 the Surgeon General of California, is among the pioneers who are shifting practice on the basis of this new understanding of the impacts of childhood trauma.

Most of the new research looks at the body’s fight, flight, or freeze responses and their long-term impact on the development and functioning of brain and body. The joint phenomena of dissociation and switching are an elegant survival mechanism that some of us, who lived with persistent, unpredictable toxic stress as very young children, developed as our approach to the freeze—or death-feigning—response. When the trauma seemed life-threatening or too overwhelming to bear, our systems shut down and created a new psychic state to deal with it. Porges’4 Polyvagal Theory is helpful in understanding how and why this occurs.

My internal community of alters is incredibly cooperative and mostly leaves interactions with the outside world to my apparently normal personality (ANP), who was in her 50s before she knew anything about the others. Generally, my alters have no interest in being out in the body except with very safe people, such as our trusted therapist and physicians, or close friends. But sometimes, as happened in the ED, someone will come forward and take over unexpectedly. People with dissociative disorders live along a spectrum of how many alters they have and how often the alters switch and take control. And we who live this way are far more common than most people think, precisely because the whole point of being dissociative is to hide what we don’t want others to know. Many of us live very productive lives and show few, if any, outward signs of a disorder. In fact, I call it my superpower, because it gave me 50 years of a great life—a 30-year, happy marriage, 2 loving children, a master’s degree, and a career of service—before I learned the secrets of my childhood. And this same superpower has been an essential part of my healing.

DIAGNOSIS

During the 6 years before my diagnosis, as my body started falling apart with muscle weakness, brain fog, and seizure-like attacks, I was a confusing case for everyone. The first neurologist I saw conducted a variety of tests and announced that everything appeared normal to him; it was all probably just stress. Although he knew very little about me, my life, or what kinds of stressors might be present, he proffered a prescription for Prozac [fluoxetine] and bid me follow-up with him in 6 months.

I wonder what would have happened if I had been compliant and filled the prescription? How long might the Prozac have suppressed the symptoms without him finding, or even looking for, what caused them? How would that have affected my life and health? Would I ever have found my way to genuine healing, or would I have wandered along in a drug-induced haze and never learned my truth? I’m glad that ACEs science now gives medical people new screening tools that help identify childhood trauma and its sequelae.

Eventually, I found my way to the neurology clinic at a local world-class teaching hospital. My neurologist there took no such short cuts, but it took her 3 years to rule out all the other possibilities and set me on a path to get out of the wheelchair and reclaim my body, mind, and active life. After exhaustive testing, when she finally learned that I had tried to kill myself when I was 12 (something I had dismissed as unimportant), she told me that the secret to my mystery illness could probably be unlocked if I could find out what was bothering that 12 year old. As much as I fought the idea of a psychological diagnosis at the time, she was right. I began working with an intuitive and highly skilled psychotherapist, and as the secret horrors of my childhood began to emerge, my physical symptoms subsided.

My primary care physician, a down-to-earth internist who loved her medical school psychiatry rotation, witnessed all of this with interest and respect. Together with my therapist, we came to understand that physical symptoms, which represent actual events from my childhood, are a primary means of communication from my subconscious mind. Whenever a new symptom appears, she assesses whether it needs medical or psychological attention. Most of the time, she clears me medically and leaves me to figure it out with my therapist. What a blessing that she doesn’t feel the need to medically treat every symptom that comes along, but rather sees them in the larger context of my diagnosis and healing.

When memories of painful, scary medical experimentation in an examination room like hers became clear, we understood that my periodic nervousness couldn’t be dismissed as “white coat syndrome.” Sometimes, she had to deal with frightened young alters and joked once that she should bill me for 3 appointments that day because she visited with 3 different people. She speaks kindly and age-appropriately to each alter she encounters, understanding that each one is a different age and developmental stage, based on when bad things happened during childhood. She always positions herself to keep the exit unobstructed, even in her smallest room, so that neither I nor any alter ever feels trapped. With knowledge and compassion, she has created her office as a safe space for all parts of me to share our aches and pains. In addition, she is acutely aware that I had no control over what happened to me in childhood and always allows me to exercise agency and control over what happens to, and goes into, my body.

She monitored the blood pressure crisis that took me to the ED and later told me that the ED physician who fled the room when Jane switched, called her to ask what to do. Her advice was to treat with respect each alter who appeared, mindful of their need for safety and personal space. Hear what each has to say, because it may include clues to the symptoms you are trying to treat. Unfortunately, the ED physician never returned to use that advice.

HEALING

The hospital kept me overnight for observation, and numerous tests found no medical issues to explain the dangerous spike in blood pressure. My first stop the next afternoon was to see my therapist. During 4 hours of gut-wrenching therapy during the next 2 days, I learned much more about the medical experiments I had endured between the ages of 8 and 12 years, and how my alters had worked together to hide the fear and pain so that the body would remain calm and cooperative.

Now, decades later, one of the alters involved had been ready to tell her part of the story but felt no one would listen. She had chosen to make the body feel sick during a gathering with safe friends, to get attention. But when the paramedics were called, she couldn’t control the reaction it triggered.

The jump in blood pressure was caused by a pocket of hidden terror—the terror of a 10 or 11 year old who didn’t know what was about to happen to her body, how painful it would be, how long it would last, or if she would die from it. Although other similar memories had been released years before, this one had somehow gotten stuck. When it came time to release this fear, she knew no other way than to do it full force through the body.

In my physician’s office, 3 days after the ED visit, my blood pressure was 122 over 72 (mmHg). She listened appreciatively as I (and others) explained what we had learned in therapy and declared, “Well, we’ll monitor you for a while, but I don’t need to treat you. You’ve got this.” We laughed together, relieved at the truth of her statement and awed, again, at the power of somatic memories.

My holistic chiropractor and I also have experienced this power and have learned to use switching to promote healing. A couple of years ago I appeared in her office with nagging pain in my left hip and thigh. I was pretty sure it stemmed from a childhood injury that happened when one of my alters was in control of the body and fell down some stairs. The chiropractor and I decided the issue might best be resolved if the alter, Priestess, who was present in the body when the injury occurred, was present as she worked on it.

I settled on her table face-down, and she did some adjustments based on her initial observations of my body. Then she asked permission to talk with others. George, my main protective alter, came first to make sure it was safe. At first, he was curt with her, but she checked the body and told him he seemed to be in good alignment. He felt her gentle touch and went back inside, satisfied that it was okay, not like the situations we had experienced as a child.

With George’s all clear, Priestess, who can be quite imperious, came forward and the body tightened up, as it always does when she is present.

 “Are you a doctor?” Priestess wanted to know of the woman now touching her body. The chiropractor introduced herself and her credentials as respectfully as she might to any adult, and, as she made adjustments, Priestess felt her body release years of tension.

“You have done a good job. It is good to be in alignment,” Priestess intoned by way of a thank you when the chiropractor was finished. And she relaxed back into the recesses of the mind.

As she left, Jane popped in to test whether she could sit cross-legged.

“Oh, thank you, thank you!” Jane gushed. “This is the first time in a really long time I could sit this way without it hurting! I’m so excited! It’s my very favorite way to sit. You must be the very best doctor in the whole wide world!”

Experience has taught us what neuroscience confirms: Trauma can be stored in muscles and organs for many years1—decades in my case. Similar to what happens in talk therapy, it turns out that somatic symptoms may best be released if the identity state, or alter, who was present at the time of the trauma is present to help identify and release them.

I feel greatly blessed to have been brought back from a period of mental and physical debilitation, to full-functioning good health and wellness by a group of professionals who helped me unlock and decipher the messages of long-hidden traumatic body memories held by dozens of alters (a number that continues to decrease as we heal). Dissociation and switching were our way of dealing with the original traumas, and switching, with differentiated treatment, is key to our healing. So, as mentioned in the Sidebar: Tips for Practitioners, if someone tells you s/he has a dissociative disorder, be open to the unexpected.

19.094

Disclosure Statement

The author(s) have no conflicts of interest to disclose.

Acknowledgments

Kathleen Louden, ELS, of Louden Health Communications performed a primary copy edit.

How to Cite this Article

Armstong B. A patient’s view of the challenges and blessings of her dissociative disorder. Perm J 2020;24:19.094. DOI: https://doi.org/10.7812/TPP​/19.094

Author Affiliations

1 Certified Life Coach, Pasadena, CA

2 Retired, Casey Family Programs, Los Angeles, CA

Corresponding Author

Bonnie Armstrong, MA, ACC ()

References
1.    Van der Kolk B. The body keeps the score: Brain, mind, and body in the healing of trauma. New York, NY: Viking; 2014.
2.    Felitti VJ, Anda RF, Nordenberg D, et al. Relationship of childhood abuse and household dysfunction to many of the leading causes of death in adults. The Adverse Childhood Experiences (ACE) study. Am J Prev Med 1998 May;14(4):245-58. DOI: https://doi​.org/10.1016/j.amepre.2019.04.001.
3.    Burke Harris N. The deepest well: Healing the long-term effects of childhood adversity. New York, NY: Houghton Mifflin Harcourt; 2018.
4.    Porges S. The Pocket Guide to polyvagal theory: The transformative power of feeling safe. New York, NY: WW Norton & Co; 2017.

Keywords: Adverse Childhood Experiences (ACEs), childhood trauma, dissociation, dissociative disorders, holistic healing

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