Invisible Illness
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Invisible Illness

It’s Not Just You: Complex Trauma is Everyone’s Problem

I didn’t need a diagnosis to find healing, but it sure would have helped. We can’t wait on the DSM-5 to improve access to care for C-PTSD.

Content warning: rape

The American Psychiatric Association (APA) released an article on December 28, 2021, announcing that an update to the DSM-5, the DSM-5 TR (text revisions), will be released in March 2022.

As someone with a condition that is recognized by many mental health professionals, yet has not been added to this definitive reference guide, I have a particular interest in how it will evolve during my lifetime. When the article made it to my LinkedIn feed, I sat up in my chair and let it grab my full attention.

I’ll sum it up for you. The revised edition most notably includes the addition of prolonged grief disorder, new symptom codes for suicidal behavior and nonsuicidal self-injury, a new category of unspecified mood disorders and updated language to describe transgender experiences and antipsychotic medications.

There’s also a swath of “clarifying modifications to the criteria sets for more than 70 disorders, updates to descriptive text for the majority of disorders based on literature reviews and a comprehensive review of the impact of racism and discrimination on the diagnosis and manifestations of mental disorders.”

Many of these long-awaited updates will contribute to a higher quality of care for an untold number of people. But we still have a long way to go: commenters on the LinkedIn post called for updated terminology to describe borderline personality disorder, specific diagnostic criteria for adult ADHD and recognition of postpartum mood disorders up to 12 months after childbirth.

A Complex Problem

I was disappointed but not surprised to read that complex trauma (C-PTSD) would not be recognized as a distinct diagnosis from classic, straightforward PTSD. The main difference between the two is that while PTSD is typically caused by one or more isolated traumatic events, complex trauma is usually caused by continued or repeating traumas that may be more subtle or environmental.

Complex trauma commonly begins in early childhood, for instance, in cases of neglect, child abuse, or even unmet emotional needs. It can result in difficulty controlling emotions and forming relationships as well as a lot of stuff that looks like anxiety, depression and panic disorder.

Complex trauma is slippery, and because it’s so emotional and deeply ingrained over time, some think it has the potential to cause more intense symptoms that are harder to recover from than PTSD. One of my past therapists explained it to me as “water torture trauma,” a slow drip of one little thing after another, compounding for several months or several years.

It takes a lot of explaining to really understand the impact of these experiences, and there’s a lot of room for differences among them. Not very measurable for scientific purposes like diagnosis and insurance coding.

When I looked through other people’s reactions in the LinkedIn comments, I saw similar frustration about “historical or generational trauma,” “attachment trauma” and “systemic and relational disorders.” Were we all talking about the same thing? I don’t know that there’s a definitive answer to that.

Toward a Functional Definition of the DSM-5

I learned most of what I know about “the heavy purple bible-o’-madness that sits on a clinician’s shelf” from Esme Weijun Wang’s The Collected Schizophrenias, a brilliant essay collection that chronicles this misunderstood category of mental illness as it exists in our society today, from an unprecedented 360-degree vantage. (Here’s my review in Punctuate Magazine.)

She reminds us that the DSM-5 is a human construct, “like the Judeo-Christian bible, one that warps and mutates as quickly as our culture does. The DSM defines problems so that we can determine whether a person fits into them, or whether a person has lapsed out of the problem entirely — which is not to say that their life changes, even if their label does.” In clinical practice, the DSM isn’t the be-all-end-all, but it has huge effects that can’t be ignored.

From her own experiences with schizoaffective disorder, Wang teases out the benefits and drawbacks of claiming that label, among family and friends and specific medical, legal and social situations.

For instance, “a diagnosis is comforting because it provides a framework — a community, a lineage — and, if luck is afoot, a treatment or cure. A diagnosis says that I am crazy, but in a particular way: one that has been experienced and recorded.” But the DSM-5 can determine what kinds of treatments your insurance will cover and, in most US States, whether you may be committed against your will.

My Life Without Labels

In the medical charts, I have access to from the time I underwent the most effective trauma therapy treatment, the words “complex trauma” or “C-PTSD” are absent. It’s kind of a miracle I found a therapist at a Medicaid-friendly clinic in Chicago who was learning EMDR (eye movement desensitization and reprocessing) to begin with.

She warned me that she was still in training for that particular modality, which is recognized as highly effective exposure therapy for those with complex trauma, and asked if I’d like to try it anyway. I had spent so much time working on symptom reduction through traditional cognitive behavioral therapy (CBT) for intense panic attacks as well as anxiety and depression that I would have done almost anything for a shot at relief.

If we take a quick flashback to my first experiences with therapy, one important thing to know is that I was about seventeen and still in a relationship with the young man who raped me and continued to coerce me into sexual acts I wasn’t ready for.

I’m sure my therapist didn’t get a very accurate picture of things from my perspective, but I wasn’t super comfortable talking to her either. I got a prescription for citalopram and did a little work on my self-esteem, but the root trauma stayed under the radar while other things, continuously butting heads with my parents and toxic work environments, kept piling on.

The one that really hurts is my second encounter with therapy years later after I was on my own and ready to admit (confidentially) that I was a rape victim. I spent the first hour with my new therapist tearfully choking through my story.

And then we went back to symptom reduction, the anxiety I was experiencing at work, my depression and detrimental affair with the snooze button. She printed worksheets and told me to get a coffee pot with an auto-timer. I started a different daily medication and was blessed with Xanax for frequent panic attacks.

It nearly put me to sleep, but I could (usually) make it through the rest of the workday without totally breaking down. I consider myself lucky that I eventually found the right help and effective treatment because not everyone does.

A Both-And Approach

I wonder if the DSM will never have an accurate and helpful set of diagnostic criteria for complex trauma because it’s a problem that’s bigger than the individual.

Complex trauma is just as much cultural as it is clinical. While not everyone who experiences trauma will deal with lasting effects, it is a completely natural human response to a certain kind of conditioning: the bad stuff that happens to us.

We become diseased when we outgrow the survival mechanisms we’ve developed, when they are more hurtful than helpful, or when our environment is no longer dangerous — and fight or flight is still hardwired into our brains and bodies. It’s a fundamental misunderstanding that isolates the traumatized individual from everyone else.

Trauma-informed care has evolved as a cultural practice within the mental health care community to cover this need, and there are a few evidence-based treatments out there that work particularly well for complex trauma, including cognitive processing therapy (CPT) and EMDR.

However, there are still major cracks in the system that thousands of people are falling through. It’s hard to find helpful answers when you’re dealing with an unspeakable pain that flares up at the most innocuous triggers. I used to say that my panic attacks were like an allergic reaction to certain types of stress.

It was more like breaking out in hives than crying over something truly upsetting. Once I got started, it was almost impossible to stop, and my energy would be drained for the day. Xanax was the only quick fix, and eventually, I had some success with mindfulness-based stress reduction. But it took a lot of practice.

While I think it’s going to take both wide-ranging social change and clinical acceptance of C-PTSD as a distinct condition to make a dent in this invisible problem, I think it’s encouraging that our society is finally looking for other ways to address health and wellness issues — outside the confines of our sham medical-industrial complex. The vocabulary of trauma has worked its way into mainstream media, simultaneously for better and for worse.

I’m not a psychiatrist, but from a cultural standpoint, I can suggest a few changes that could make a big difference for people like me. People who work with children and adolescents need to recognize the signs of complex trauma and build a pipeline to connect them with effective treatment options. We need clearer lines between mental illnesses with chemical, hereditary causes and those with human, emotional causes.

And we need to keep talking, writing, advocating and awareness-raising because therapy doesn’t have to be the only way to deal with mental illness. Ministers, youth group leaders, teachers, guidance counselors, aunties and uncles, social workers and daycare workers need to speak the language of trauma. Children need to be recognized as individuals with valid feelings who deserve compassion. We need to teach them about consent, bodily autonomy and the anatomical names of their body parts.

We need to learn how to process our positive and negative emotions earlier and more explicitly: we need to talk about the bad stuff instead of shoving it down. We need to recognize that experiences do not dictate our identity or affect our inherent value. And people in power, people with any kind of power at all, need to be afraid of harming others.

Sign the Petition

Since I first wrote this story, I’ve found out that there is a Change.org petition to Add C-PTSD to the DSM-5. As of Sunday, March 6, the previous goal of 5,000 has been surpassed and they are now looking for 7,500 signatures. I’m not sure how much sway this will have with the APA, but as I said, it’s about more than that. I signed it and I hope you will too!

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We don't talk enough about mental health.

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Kelsey Hoff

Kelsey Hoff

Poet, freelance writer and blogging enabler in Chicago. Sharing my experiences with mental illness along with some thoughts on how we can be better.

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