Brianna’s Fear of Harm Story

My personal low was the afternoon I dropped off my then 14-year-old
daughter at a therapeutic boarding school. The road to that moment
was full of expenditures: time, energy, emotion, car mileage, and
money. We had a long laundry list of our attempts to help her: 

• • Many medication trials,
  • Different therapy modalities, and
  • Multiple schools.

Desperately seeking answers, we collected a stable of experts:
psychologists, psychiatrists, neuropsychologists, occupational
therapists, learning specialists, nutritionists, social skills experts,
etc. With each new professional, we received differing opinions and
conflicting diagnoses such as: 

• • Borderline personality disorder,
  • ADHD,
  • Obsessive compulsive disorder,
  • Oppositional defiant disorder,
  • Major depressive disorder, to name a few. 

We were literally exhausted from the decade long wander in the
wilderness. 
 
This Hail Mary therapeutic boarding school in-placement was
heavily promoted by the team of highly educated, experienced, and
truly well-meaning professionals. Having no better solutions
ourselves, we finally agreed to send her away. 
 
At drop-off, I felt I was abandoning my child. I was leaving a scared,
challenged girl – who did NOT drink, do drugs, act out sexually, steal.
run away, cut, or end up in jail – to live with a population of
extremely troubled girls exhibiting some or all of the above
behaviors, overseen by a staff unqualified to deal with my daughter.

As I was getting ready to drive away, she looked at me with sad
desperate eyes and quietly asked “Mom, why do I tell people I am

here? That I don’t do my homework?” What was left of my already
broken heart shattered into a million tiny pieces. 
 
That unsuccessful placement was followed by:

• • A respected Wilderness program.
  • A highly rated residential treatment center, where any chance
    of sleep was thwarted by sharing a hot, stuffy room with 3 – 4
    other girls, and a noisy night staff who congregated directly
    outside her door.
  • A year and a half stint at a young adult transitional program –
    because we didn’t know what else to do and she hadn’t
    “graduated” successfully from any of the aforementioned
    programs.

In hindsight, our efforts to help essentially removed my daughter
from her safe people, places, and things and consigned her to the
worst possible situations for her: moving from place to place,
constantly being with strangers in high densities and very warm
buildings, being expected to follow rigid schedules and protocols –
all while being totally sleep deprived. The sum total of these
experiences was devastating to our hearts and pocketbook, as well
as to my daughter’s psyche and self-worth. She was provided “proof”
daily that she was a failure and unfixable.
 
After 3 years away (and not “cured”), and frankly less trusting and
more fearful than when she left, we serendipitously crossed paths
with Dr. Steven Mattis, the neuropsychologist who just happened
to be on the Board of the Juvenile Bipolar Research Foundation! Dr.
Mattis evaluated the cluster of symptoms my daughter has
consistently exhibited since birth, and gave us a diagnosis:
Thermoregulatory Fear of Harm Disorder*. 
 
At last! There was a name for my daughter’s struggles! And this
disorder is inherited with biological causes so her behaviors were
not willful but symptoms! (Full disclosure: I no longer sneak away to

read the DSM searching for answers. FYI, I am not the only FOH
parent who has admitted to this practice!)
 
While my daughter’s final outcome is still unknown, our daily
existence has greatly improved:

• • Home is no longer a war zone. She exhibits less anger and
    irritability. My understanding of her diagnosis has improved
    my own frustration tolerance.
  • Her anxiety is lessened as evidenced by no more nail biting;
    previously she always had infected fingers. Also, she has
    managed to walk into an airport, through TSA, and onto an
    airplane, a major accomplishment!
  • Doctor and dentist visits are more likely to happen (though
    still not guaranteed), and I am not canceling 2 or 3 times
    before we actually get there. With a generous lead time, I can
    even get her to the lab to have blood drawn!
  • Sleep is improved with a combination of medications like
    sublingual ketamine and her own “hack” of having 3 fans
    blowing on her all night. 
     

When sharing what her life was like before accurate diagnosis and
effective treatment, one particularly poignant exchange went like
this: “Mom, in your dreams, you wake up before the bad thing
happens. In my nightmares, I don’t wake up —- and am engulfed by
the flames or killed by the bad guy.”

Imagine living like that…
 

Besides the knowledge, understanding, and compassion I’ve gained
from having the accurate diagnosis, I also experience relief because
in this community that there are others who “get it”. Personally, I
benefit from the parent and caregiver support groups where we
laugh, cry, commiserate, encourage, and even share what cooling
items are currently on sale at Amazon. 
 

Whether parent, patient, family, practitioner, educator, or friend, if
you’ve made it this far, you have likely lived with or already heard
some version of my family’s journey. I hope our story has convinced
you of two things:

1. 1. Fear of Harm behaviors are not willful but are part of an
      inherited and consistent cluster of symptoms linked to
      thermal dysregulation.
   2. There are proven medications and treatment strategies
      available to improve the lives of patients and their support
      networks. 
       
       

*The name has changed since my daughter was diagnosed.

My daughter’s name has been changed for this story.