New Diagnosis, Same Shizizzle

Monday, October 7, 2019

I have known I have a mental illness for a long time. Before I knew symptoms or even a name for it, I've known. 3 years ago I received a diagnosis for OCD that changed my life. My diagnosis empowered me by giving me both a name for my disease and also access to resources to help me. While I'm not happy in any way to have OCD, I'm grateful to know I have it. Knowing makes all the difference in the world.

I've also intuitively known that my OCD is accompanied by something else, something a little more elusive and difficult to identify. You may have heard me refer to it as "my childhood" or "childhood stuff" but never in more detail than that. My mom has a name for hard stuff beyond description - "shizizzle."I've coped by treating it with less invasive interventions - some light therapy here and there, writing, drawing, making jokes about it, and talking through it with safe people. These solutions have worked well. I have coped successfully for upwards of ten years with those methods.

Until February 2019.

That was my two year anniversary of my OCD diagnosis. I felt awful. Depressed is the best word for it. It wasn't anything near what I had experienced after my son was born, but it still underlined my days. I was tired all the time. Little glimpses of light and energy were a blessing and I took advantage of them by working on my new home, which did spark joy. But sparks only last if they can catch fire to something, and there was nothing in me to kindle a flame. As I examined my circumstances, I saw a lot to be happy with. A new home, a great ward, stability, family close by. Good things. But still, the sadness persisted. With my doctor I increased my medication dosage to alleviate the most alarming symptoms. It helped. After a few months of being more active in making friends and working outside on my garden, I felt comfortable reducing my medication back to my standard low dose. The underlying sadness was still there, but it was lessened.

Summer arrived and I was excited for so much - a first time real garden, Independence Day celebrations, my son's birthday, and small family vacations were things that highlighted my calendar. But as the weeks went by, the persistent sadness again became more heavy. Even surrounded by new friends and loving family, I felt lonely. Bullying thoughts sprang up in my mind towards myself. "No one loves you," they'd say. "These people like you now, but wait until they find out what's happened to you. No one likes trash," they continued. "You are such a fake, telling people to love themselves when you hate the world so much," and on and on until the thoughts came so forceful and often that I worried they were true. I tried every skill in my toolbox I had been taught to manage OCD, thinking these intrusive thoughts were created by my illness. But as hard and as many techniques as I tried, nothing helped.

Things got progressively worse. In addition to the constant overwhelm I was feeling, I began to feel disconnected from God, which was incredibly alarming to me because I value that connection above basically all else. I worried my marriage was failing because I was failing. I was constantly irritable, had no energy to do even the most basic housekeeping tasks, and I cried all the time. I was having weekly, then daily, then twice-daily panic attacks. Then the nightmares came. It became near impossible for me to sleep. I grew irrationally afraid of the dark. And as if things could not get any worse, I started to have nightmares while awake. Its about as fun as it sounds.

One night I found I could not sleep because the painful thoughts would not stop. I became so overcome with anxiety and anger that I could not lie still. I walked out to my garden and began pulling weeds and watering the plants. It was past midnight. As my feelings overwhelmed me, I began to weep heavily. In this moment I realized two things: first, if medication and techniques that had worked in the past were not working now, I'm probably not dealing with OCD; second, if things had gotten this difficult for me for this long, it was time to call in more help.

Within two weeks, I found myself in a new therapist's office explaining my symptoms, life history, and my hopes for treatment. At the close of that first meeting, she asked,

"Are you familiar with the term 'Complex Post Traumatic Stress Disorder'?"
"Yes," I said, bracing myself. "I thought that diagnosis was reserved for people who have suffered extreme chronic trauma."
She looked at me. I looked at her.
Shitz. I thought to myself as I looked at the floor with tears in my eyes.

And that is the story of how I found out that I don't have just one mental "thing" to deal with - I have two. They both suck. They feed off one another. Its a game of which came first, the chicken or the egg? OCD or C-PTSD? Luckily I think I have the answer.

C-PTSD is characterized by three things: cause, length of exposure, and effects.

Cause & Length of Exposure

The difference between C-PTSD and other mental illness is that C-PTSD is not an illness, it is an injury. There are no genetic markers that predispose a person to develop C-PTSD. The Center for Treatment of Anxiety and Mood Disorders states that individuals develop Complex Post-Traumatic Stress Disorder after experiencing long term, chronic trauma. C-PTSD is most often developed in response to childhood trauma. Beauty After Bruises, an outreach program for survivors of childhood trauma who have C-PTSD, explains the significance of these circumstances occurring during childhood.
"For those who go through this as children, because the brain is still developing and they're just beginning to learn who they are as an individual, understand the world around them, and build their first relationships - severe trauma interrupts the entire course of their psychologic and neurologic development."
Beauty After Bruises defines the disorder as stemming from severe, repetitive trauma and offers some examples of what these circumstances may look like. They include:
  • chronic emotional and physical abuse
  • sexual abuse
  • extreme parental neglect
  • sex/drug trafficking
  • child exploitation
  • recurrent medical traumas
  • living in a war zone
Nadine Burke Harris, author of The Deepest Well: Healing the Long Term Effects of Childhood Adversity has found in her research that the increased physiological stress response to childhood adversity significantly affects normal brain activity, hormonal response, and physical health not only during adverse experiences but has long-lasting effects well into adulthood. I'm not going into the complex biological process here when you can get the fascinating info right from her. I'm not a scientist and won't even try to pretend to be!

Finally, there is a difference between standard PTSD and C-PTSD. PTSD is the more familiar of the two and typically develops in response to a one-time event. It also has its own symptom markers. It is different from C-PTSD because of the cause and length of exposure to trauma. 


Symptoms of C-PTSD include the following:
  • low mood
  • disassociation
  • uncontrolled anger
  • self-destructive behavior
  • nightmares
  • flashbacks (ahem... what I called "day nightmares")
  • preoccupation with thoughts of revenge
  • hopelessness, worthlessness, and despair
  • feelings of numbness
  • trust issues
  • intense shame
  • social isolation
  • digestive issues
  • difficulty with relationships
  • sexual promiscuity
  • physical or medical issues
  • suicidal ideation

I have, at any given time in my life, had some or all of these. Some more than others, at times more often or intensely than not.

But the last 3 months have seen me through some of the most alarming: the numbness, nightmares, and flashbacks. My theory on why C-PTSD has shown up with such force now is this: I am, for the first time ever, in a safe and stable place with a solid support system that can help me while I work through scary stuff. I have many things here I didn't have in Phoenix: family, a compassionate and understanding ward, and willing and available friends. I also have a strong foundation of knowledge and self-awareness that I have worked tirelessly to maintain. I think my soul is telling my body its okay to fall apart now and let the pain go.

Recovery after a significant injury requires therapy. My husband is a physical therapist and often sees patients multiple times a week so he can help them gain strength, flexibility, and mobility post-injury. C-PTSD is no different. After intensely vetting therapists, I found someone I trust and is a great fit for my needs. She allows me the space and opportunity to take complete responsibility over the healing process, offering guidance as needed. We get to work on what I'm ready to work on, which are often my most horrific and shameful experiences. She is the first therapist I've worked with who has not shied away from the intensity of the work that needs to be done. I bring her my literal dreams and nightmares, my shame and my fear, and all my anger, and she sits with me while I figure out what I'd like to keep and what is ready to burn. I feel so good after our visits. I wish I could see her more often than once a week.

When working with C-PTSD, symptoms often get much, much worse before it gets better. So far, that has been my experience. It has a lot to do with digging up painful stuff you did or wish you could forget and sifting through the fallout. It is, for me anyway, a case of the biblical story of Moses at the bitter spring called Mara. When Moses throws a bitter bush into the spring of bitter water, the water turns sweet. Therapy is the bush. The plant is the treatment. I am sweeter for it.

In her book The Deepest Well, Dr. Harris talks about the significant consequences facing those with high ACE scores. (An ACE score is the number of Adverse Childhood Experiences you have had.) The higher your score, the more at risk you are for a myriad of health issues including heart disease, obesity, cancer, COPD, mental illness, and suicide. The highest score you can have is a 10. The threshold score to be considered "high" and at risk is a 4. Mine is 5. Knowing this, I am highly motivated to be serious about healing. The health risks associated with ACE's are mitigated with education, therapy, and support.

With the exception of a small, single handful of people, I have shared little with my community about what I'm facing, let alone any details. When I have, they have been compassionate and anxious to help. They always ask, "What can I do for you?" I am honored to have their offers. Unfortunately, the answer is, "Not much. Pray for me. Love me." Now that I'm in therapy, there is little else to do but go through the process. No one can do it for me. I have a friend who I am indebted to for having my daughter over every Tuesday morning until she goes to school. I have a husband who is perfectly equipped with in-depth knowledge of my diagnoses and how to help. Other family and friends offer additional babysitting, support, meals, and one-on-one time with me when they can. I am grateful for every one.

If you'd like to read more about C-PTSD, please check out some of the links and resources I've mentioned in this post. Hopefully as I complete more treatment in the coming months I will regain some of my brain capacity and energy to share more with you. Until then, thank you for being understanding and patient with me. Thank you for knowing that if I leave the party early, walk out of your lessons or talks at church, don't respond to texts or calls, or cancel plans entirely its not because of you or anything you said. Its because I'm attempting to prevent or manage a panic attack or flashback. Thank you for helping me, for asking me how I am, for inviting me to your girls nights and walking groups and get-togethers. Thank you for being a good friend. Thank you for being good to me.

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