Bayesian - II: ACEs

The thing that happens after you are diagnosed with Functional Neurologic Disorder is not a follow up with a neurologist – you follow up with a psychiatrist and, ideally, enroll in therapy. Lucky me, I already had both of those and I liked each of them very much.

One risk with this diagnosis is that patients may receive it and think it is proof that their symptoms are “all in their head”. I fight those thoughts, but I try to remember that everything is in our heads, even the experience of a broken bone. I feel grateful the professionals I associate with treat it with the legitimacy I aspire to have myself.

I don’t remember my psychiatrist’s reaction to the initial news other than a potential “a-ha!”; it made way more sense to him than some Zoloft-sensitive epilepsy. Sertraline (brand name Zoloft) is a preferred choice for patients with epilepsy after all, thanks to the fact it doesn’t lower the seizure threshold quite like some other SSRIs. I do remember that he seemed genuinely pleased for my excitement about the whole thing. I finally had an answer, and it wasn’t that I was developing dementia at the ripe old age of 32.

(That was a real thing actively terrifying me.)

I don’t remember my therapist’s reaction to the news at all, or even what we talked about. It was a year ago now at this point. I have no doubt she purposely reflected back my happiness at finally having an answer, celebrating in her therapist-y way.

So What Next? #

Instead of seizures and head drops and confusion and jerks, the symptoms were replaced with something else that continued to be disruptive to doing anything that required mental effort. On the upside, my “new” symptoms were way less concerning to bystanders.

I would just have bouts where I couldn’t think. Lights are on but no one’s home. Hah, yeah, no biggie.

What?

Well, that sucks. But now, after my lovely weeklong stay at the Mayo Clinic epilepsy monitoring unit, I knew a lever: Stress. I believe I have more control over the triggers of my symptoms than if I had epilepsy. Especially since I have some time off work (thanks for the encouragement, Mayo), I have plenty of time to just focus on me and making improvements to my life situation. Ezpz. Four simple steps to success:

1. Write down things that make me stressed
2. Stop getting stressed over them
3. ???
4. Profit!

I’ve read a mindfulness book or two. I have literal shelves full of self-help books. I was made for this.

I knew exactly where my problems were from.

Here Comes the Crux #

But first… this seems like a good moment to talk about the connection between trauma and “how do people stress themselves sick?” How does someone even get here? Before one can Science, one must Data.

Back in 1998, a landmark study dropped that introduced the concept of Adverse Childhood Experiences, or ACEs¹. We already had a pretty good feeling by then that childhood adversity was impactful to health, but we were missing the data at the volume needed to be able to state as much officially. Let’s make a questionnaire, they said. It’ll be great, they said.

1. Did you feel that you didn’t have enough to eat, had to wear dirty clothes, or had no one to protect or take care of you?
2. Did you lose a parent through divorce, abandonment, death, or other reason?
3. Did you live with anyone who was depressed, mentally ill, or attempted suicide?
4. Did you live with anyone who had a problem with drinking or using drugs, including prescription drugs?
5. Did your parents or adults in your home ever hit, punch, beat, or threaten to harm each other?
6. Did you live with anyone who went to jail or prison?
7. Did a parent or adult in your home ever swear at you, insult you, or put you down?
8. Did a parent or adult in your home ever hit, beat, kick, or physically hurt you in any way?
9. Did you feel that no one in your family loved you or thought you were special?
10. Did you experience unwanted sexual contact (such as fondling or oral/anal/vaginal intercourse/penetration)?

Source: ACEs Aware Adult Questionnaire

Especially if you have experienced multiple of these, you might notice a few problematic things about their descriptions.

• They don’t account for how severe an event was.
• They don’t account for how long an event persisted, or how many times it was repeated.
• They don’t account for the age of the child when a given event was experienced.

But we gotta start somewhere, right?

ACEs are also highly prevalent. To give you an idea just how prevalent, I’ll give you a lazily-copy-pasted excerpt from this 2024 CDC paper:²

ACEs were common, with approximately three in four students (76.1%) experiencing one or more ACEs and approximately one in five students (18.5%) experiencing four or more ACEs. The most common ACEs were emotional abuse (61.5%), physical abuse (31.8%), and household poor mental health (28.4%). Students who identified as female; American Indian or Alaska Native; multiracial; or gay or lesbian, bisexual, questioning, or who describe their sexual identity in some other way experienced the highest number of ACEs. Population-attributable fractions associated with experiencing ACEs were highest for suicide attempts (89.4%), seriously considering attempting suicide (85.4%), and prescription opioid misuse (84.3%).

(Note: They used a slightly modified version of the ACE-Q with the above statistics.)

So now we know what ACEs are, and we know most people have at least one. What does this have to do with health?

Year after year, we continue to find association between adverse events in childhood and negative health outcomes. You’ve heard of studies, but have you heard of systematic reviews or meta-analyses? If not, for purposes of this random blog post on the internet, you can think of them as a “review of studies”, or sometimes even a “review of reviews of studies”.

• A 2017 systematic review and meta-analysis of 37 studies showed a 2-3x increase in odds for disease in individuals with four or more ACEs.³
• A 2024 systematic review and meta-analysis in BMC Medicine found association between ACEs and likelihood of having two or more chronic conditions at the same time; every additional ACE increased the odds of multi-morbidity by 12.9%.⁴
• A 2024 umbrella review of systematic reviews found ACEs significantly associated with ~66% increased risk of anxiety and ~87% increased risk of depression.⁵
• Population attributable fraction estimates: preventing ACEs could reduce adult heart disease by ~9–22% and adult depression by ~76–78%.⁶

And about functional neurologic disorder specifically:

• A 2018 meta-analysis of case-control studies found about a 3x increase in adverse life experiences vs. healthy controls in adult FND populations.⁷
• A 2022 paper supporting the idea of a “trauma subtype” of FND notes that most adverse events in adult FND populations are rooted in childhood.⁸

Now, all that said, correlation is not causation. But after so many associations, much of the research community has settled on something like: there is some shared mechanism in the body influenced by childhood trauma that negatively impacts wellbeing later in life.

If I theorize a moment, I wonder if part of why childhood trauma potentially has such long-lasting effects is because it sets us up to stay stressed?

Intermission #

Not a trauma porn fan, but I think there’s some important context I should share.

Using the ACE-Q questions above, I have a score of seven, which puts me well into “at risk” territory for all the studies I’ve looked at that define such a category. However, I can say that the vast majority of factors that contributed to each “yes” are long in the past. So I should be less stressed now, yes? Actually… yes! I am less stressed, thanks for asking. Pretty sure, anyway. I’m not sure if my nervous system got the memo.

The most profound difference between now in my mid-thirties and childhood is perceived autonomy. When you’re a child, you are dependent on a caretaker in your life for survival. Unfortunately for some kids, the caretakers a child needs in order to survive may simultaneously be wounding them. When circumstances like these occur, it is both overwhelming to a child’s nervous system and inescapable. Y’all learned about the “learned helplessness” experiment in high school, right?

On that note, kids develop a lot of adaptations to survive traumatic childhoods. For example:

• Hypervigilance, to attempt to predict the behavior of an inherently unpredictable adult.
• Alexithymia and dissociation, for when fight and flight aren’t an option. Freezing or shutting down silly things like emotions or bodily feelings is a way to continue functioning.
• A kick-ass sense of humor. Beware the funny kids.

These adaptations can become maladaptive later in life. As a kid, not allowing yourself to get excited because of fear of being disappointed by an unstable parent? Super useful. Keeping that habit the rest of your life? Heartbreaking, whether or not you’re aware of or even feel the heartbreak.

Humor is safer, but it does remind me of that bit from Patton Oswalt’s Finest Hour where he is reflecting on his parent’s strategies with him and his brother.⁹ “I didn’t turn out fine! I’m a fat comedian with OCD. I get up in front of strangers and talk about my dick.”

He delivers it way better.

Eight-year-olds can’t go on Zillow and find a new home recently renovated with mentally stable adults, believe it or not. But all is not lost: they can grow up and (ideally) out-grow the requirement to live with those that harmed them.

Ehhhh #

To be clear, that’s an “I’m uncomfortable” eh, not an apathetic one. I want this blog to provide an underrepresented perspective on functional illness, but I’m not sure if I can do that without explaining my own situation. At least to some extent.

I’ll preface by saying that an important factor for positive prognosis is not to over-identify with the illness or the trauma that caused it. But it’s important to hold it.

Trauma is inter-generational. My mother had a long list of troubles and illnesses, but she struggled emotionally with bipolar (with psychotic features) and, due to her own upbringing, borderline personality disorder. She was a chronically stressed lady and found herself in various terrible relationships. Eventually, in the late 80s, my older sister was born after a difficult pregnancy out of a physically abusive relationship with a man I’ve never met. We’ll never know for sure what level of impact the abuse had on her future.

Children who are exposed to

\[intimate partner violence\]

 during pregnancy may be at risk for a range of long-term health consequences, including behavioral and emotional problems, cognitive delays, and developmental delays¹⁰

My sister struggles with developmental and mild cognitive challenges. Autism spectrum disorder, schizoaffective disorder, and dependent personality disorder are the diagnoses she bears, the latter-most coming in adolescence. They depict a childhood where she couldn’t thrive no matter how much she wanted to.

My mom’s best friend swooped in after my sister was born. He later married my mom and formally adopted my sister. A week and a half before her fourth birthday, I was born.

Like many folks who grew up in traumatic households, I don’t have many memories of what it was like. For things I don’t have memories of, I’ve read the medical records and psychological evaluations. I’ll attempt a fast-forward.

• Our parents had an emotionally abusive relationship, complete with alcoholism and weaponization of children. They separated and got back together multiple times. I don’t remember them ever sharing a bedroom.
• My mother, on top of being mentally ill, was also physically ill and wheelchair-bound for large swaths of my life. At one point she was diagnosed with MS, and later instead with fibromyalgia. Now I know that both of these diagnoses are associated with complex trauma in the literature, fibromyalgia more strongly than MS.
• I was a destructively parentified kid as a result. My mother was incapable of regulating her own emotions and, as would later be formalized in a psychological evaluation during The Divorce, clinically recognized as being enmeshed with me. Boundaries, who needs ’em?

Caretaker #

Yeahh that’s probably enough to cover most things. It’s at least enough context for this: Hi, I’m Shannon. I’m 34 and have been in a caretaking role for as long as I can remember, with the exception of a few college-age years where I did a lot of social skills catch-up. My dad did his best taking care of my mom and sister during that time, and he passed away suddenly at 63 in his sleep. My “out-grow the requirement to live with them” voucher expired that day.

I took care of my mom and sister for three years after that, including chemotherapy and later at-home hospice for lung cancer in the final year of my mom’s life. My sister has been exclusively in my care now for eight years, and the amount of growing she’s done during that time cannot be overstated. I am so proud of her.

I wouldn’t change anything about how I grew up – I like who I am. A lot of who I am is from the adaptations I formed as part of surviving in a home like that. For example, with enough healing, hypervigilance can become a level up for empathy.

Over my own mental health journey, I’ve learned so much about trauma. I like that when I see a colleague or friend, and I observe them do something amazing, painful, or difficult, I habitually consider them from the angle of “what kind of life did they have that led them to this moment?” I spend more time in awe of people as a result.

But no matter how many years of therapy you go through, you can’t fix maladaptive habits you are not aware you are repeating.

Back to the List of Stressors #

So if I actually had written down a list of stressors I had after Mayo Clinic, it would have been a short list. And what’s always interesting is, as I typed that sentence just now, I noticed my own breath shifted. My chest is tight. Just thinking about it gets me physically anxious. And the fact I noticed it at all just now is a product of therapy.

I live with my sister as her legal guardian. Depending on the context, she can be around 11 years old, and other times around five. In medical settings like doctor’s offices, trained by a lifetime of existing in those spaces with our mom and on her own behalf, she can get away with appearing even older.

Most of my childhood trauma is around being made to take care of adults who 1) can’t take care of themselves, and 2) don’t understand boundaries. Quite literally the same triggers I developed as a child, I continue to live with as an adult, legally bound.

Which now gets to the point of this whole post: In some ways my situation is unique, but in most ways it is not. Traumatic upbringings equip children to become adults that, often unbeknownst to them, may make choices to stay in a traumatic world.

• Sometimes by “choice”, because they don’t know a better way, or they don’t feel they deserve to seek a better way.
• Sometimes by circumstance, whether it be financial, a situation like mine where a dependent is inherited, or other ways.

Ultimately, I think what makes my story interesting for functional neurologic disorder is that I represent a population that is trying to heal but does not have the means to fully leave the circumstances that got them there in the first place. It’s like healing injuries as a chronic scab-picker. It just takes more time and persistence, and sometimes the wounds don’t heal quite right and leave a scar. Critically, you need the mental flexibility to keep relearning “this could be different” year over year, because circumstances will try to convince you it all stays the same.

After the Mayo Clinic diagnosis, I knew what I needed was boundaries between me and my sister. I thought I had some, but I didn’t have nearly enough, and I wouldn’t have realized I deserved more boundaries without a whole hospital stay. It makes sense I didn’t know — no one taught me otherwise, and in fact, the opposite was reinforced.

The next step I needed to take was to get her more services to help enable her to be less dependent on me. This would require a lot of learning on her part too; she’s never known differently.

If I can make my relationship with my sister healthier for both of us, then my symptoms, akin to a nervous system gone mad, should keep going away, right? In principle, I believe so.

Bayesian Brain #

I think the most fascinating thing about FND is that simply understanding how it works can be largely curative in certain individuals. My functional neurologic symptoms (like “seizures”) went away. I had what I could only explain as “euphoria, like I had a near death experience” – and that eventually went away too. Underneath all of it was the chronic panic, which could now float to the forefront. Managing anxiety and panic is way easier than mystery brain illness misdiagnosed as generalized seizures.

To my chagrin, I’ll find out later that “understanding how it works” isn’t a one-and-done forever cure. And I have some ideas for why that is.

Usage of AI #

An LLM was used to format and verify citations/footnotes.

An LLM was used as a proofreader/editor, but did not write or directly edit any of the content above outside of clarifying a footnote.

An LLM was used to augment my search for academic papers.