*This is the first in a three-part series exploring the state of preventative mental health care and solutions to address it.

April 18, 2018, was the worst day of my life and no one died.

I was at work when I got the call. But it wasn’t the call I was expecting—my youngest daughter’s daily check-in. Instead, it was Erin, her therapist…and she was hysterical.

“Drop everything and get here as fast as you can,” Erin demanded. “Your daughter is a suicide risk and needs a full psychiatric evaluation ASAP!”

I was shaking…and confused.

Just that morning I remember thinking that *CeCe seemed to be turning a corner. For the first time in months, she wanted to invite a friend over after school and I knew she was looking forward to the weekend when we’d all be attending the wedding of a family friend. (*Name changed to protect her privacy.)

It just didn’t add up.

When I arrived at the outpatient treatment center, I found my then 15-year-old daughter, CeCe, in her therapist’s dimly lit office. Erin had a stern, serious look on her face. I took a seat as she explained CeCe’s plan to jump in front of a train and end her life.  Struggling to make sense of this surreal scenario, I had what can only be described as an out-of-body experience. It was so unbelievable I remember pinching myself to be sure it was real.

Then, Erin handed me a sealed envelope containing a referral I think, and ordered me to bring CeCe to the ER for a psych evaluation. I understood that if I failed to comply, child protective services would be notified.

My husband would meet us at the ER. On the way there I came undone.

It had been one crisis after another and months of school refusal on top of that. My cellphone held the numbers of all the doctors and specialists we had seen chasing down a diagnosis for CeCe’s bizarre physical symptoms—rashes, chronic constipation, a paralyzed eyelid. If the list could be printed on paper it would be longer than my arm. Hardly a week passed without some sort of a follow-up visit, call to the insurance company or a trip to the lab for bloodwork. My patience was wearing out.

I angrily accused CeCe of concocting the train story to delay, yet again, her return to our town’s small, public high school. (A rapidly approaching deadline had been set by the school.) “Do you know what this means?” I asked her not waiting for a response. “Days, possibly weeks, of being held in a *mental ward and you will absolutely miss the wedding on Saturday.” (*Commonly called psychiatric hospitals or psychiatric wards.)

I was swearing and driving erratically, and I didn’t care. CeCe pleaded with me to slow down. She told me I was scaring her. I told her she was scaring me.

At that moment, all that mattered to me was making sure she understood the severity of what had just happened. The train story was improbable for a couple of reasons. First, our town doesn’t have a train line. Second, CeCe wasn’t old enough for a driver’s license and third, she’s too lazy to walk to the nearest commuter rail station—four miles away.

But when the therapist asked her if she ever thought about suicide, CeCe told her “yes”. I mean hasn’t everyone allowed their mind to go there during a low point?

I suspected the origin story of CeCe’s “plan” to be the heartbreaking suicide of a teenager we knew who was away at college in an area with active train lines.

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Then I remembered the black box warning.

Lexapro (escitalopram), like most other antidepressant medications, is associated with an increased risk of suicidal thinking, feeling, and behavior in adolescents. CeCe had recently started taking it for anxiety and almost immediately I noticed changes that worried me.

Her sunny disposition turned dark—she became uncharacteristically angry, withdrawn, and moody. When I reported my concerns to the prescribing physician at the center, she told me to give the depression medication more time to work. (It was week two of a six-week trial.)

Once at the ER, clinicians determined CeCe would not need a psych ward stay. They watched her overnight, and in the AM, the hospital psychiatrist hatched a new plan: No more Lexapro (that was contributing to the suicidal ideation) and advised a transfer to a different treatment facility. (We are fortunate to live in an area where there are options.)

The ordeal was over, but it felt like a narrow escape from something that could have gone very, very badly. I remember thinking about a powerful story I had just posted on Psycom about Kevin Hines—a man who survived (and later deeply regretted) a suicide attempt. How did I, the editor of a major mental health website, find myself here?

Thanks to my work, I was on top of the latest psychiatric research and had access to experts. I frequently interviewed people struggling with mental health disorders like bipolar II and schizophrenia. Yet, somehow, despite all that knowledge, I failed to see what was right in front of me.

Not Like Them: The First Signs of Mental Distress

My daughter’s mental distress seemed to start in high school, but the truth is signs of anxiety had been there all along. CeCe was our fourth child in just over 5 years. Our family life was hectic. As a preschooler, she always needed to know the plan for the day. She never left home without a water bottle and a snack—as if she needed to be prepared for a disaster.

As she got older, CeCe preferred to stay home on Saturday nights, unlike her two older sisters and brother. She was never bullied and had plenty of friends. I figured she was a homebody like her dad. Sundays always included cleaning her bedroom, but then I realized that she was declining social invitations, using her cleaning routine as an excuse.

It all came to a head the day the ambulance arrived at the end of her freshman year in high school (June 2017) because CeCe was dizzy. Yep, dizzy. She didn’t faint or hit her head—it was just the start of another sinus infection, but the school felt it necessary to call 911. Seriously? What kind of school policy mandates using valuable public resources that way??? (Our town has just two ambulances.)

Let’s just say that when a student leaves the building on a stretcher, the entire school knows about it. Unwanted attention on this scale in a self-conscious, sensitive adolescent can be traumatizing. CeCe’s therapist and I believe it likely played a role in the school refusal that began a little later.

A Diagnostic Odyssey

Academically, school became challenging the next fall—at the start of that fateful sophomore year. Like her siblings, she took honors and AP classes. We didn’t push her—it was what she thought she was supposed to do. She grew up watching her siblings succeed both in and out of school. Their peers elected them school leaders and team captains. They received awards and recognition for their accomplishments. Teachers liked them. CeCe wanted all that, too. When an insensitive teacher noticed her struggle and made unfair comparisons, CeCe’s self-esteem took a nosedive.

Then came the rash on her face that swells her eye shut, and gets her sent home from school…

It was the first of many bizarre symptoms CeCe developed throughout the school year that sent us on a diagnostic journey we never expected. All told she saw 21 doctors in 14 different specialties, and we filed 228 insurance claims. There was blood and imaging work, surgical procedures and medication trials, inpatient and outpatient therapy.

During that difficult time, I was introduced to an entirely new vocabulary—myasthenia gravis. anyone? (MG is a chronic autoimmune neuromuscular disorder that can weaken muscle groups.) I also learned way more than I ever wanted to about poop. (Who knew taking MiraLAX every single day was a thing?)

Within days the rash and eye swelling disappear, and daily vomiting starts. Not only does it continue for several weeks but CeCe somehow gets constipated, too. Over the next three months, CeCe and I become experts at enemas.

CAT scans, a visit to one of the country’s top pediatric gastroenterology departments (which took weeks to arrange), a sitz marker test, and a colonoscopy/endoscopy that almost forced us to spend Christmas in the hospital, all ruled out abnormalities that could be causing the GI distress. This news brought both relief and frustration.

Back at the pediatric gastroenterologist’s office in January, he suggests cognitive behavior therapy (CBT) and a trial of Zoloft (sertraline hydrochloride) which is used to treat a range of mental health disorders including depression, anxiety, panic, OCD, and PTSD. At the time, the suggestion strikes me as odd—I knew stress and anxiety could cause constipation, but I just did not make the connection in my own family. That’s what denial does.

Desperate to get CeCe well and on a normal schedule again we decide to give medication a try. Unfortunately, it doesn’t help. It makes CeCe “feel like a noodle” and she hates therapy, too. Her therapist is “weird,” (her description) but we force her to continue the sessions. She isn’t forthcoming and the therapist tells me weekly, 50-minute sessions won’t be enough to get CeCe back to school.

She recommends an intensive outpatient program or IOP. IOPs can take the form of a treatment center/therapy school—a structured program that combines daily individual and group therapy with academics (her high school teachers would be asked to email work to on-site tutors who work to keep the students up-to-date with schoolwork).

Before we go that route (CeCe says therapy school is also “weird”), school administrators at her high school suggest she try a gradual transition—two hours a day at school. That works for about two weeks but during winter break—it’s February 2018 now and she’s still not pooping—she gets another rash on the left side of her face that again swells her eyelid shut.

The eye problem triggers more missed school—I can’t go to school looking like this!—and another slew of specialists.

An infectious disease doctor rules out Bell’s palsy; a pediatric rheumatologist determines through several vials of blood that it’s not lupus or any other autoimmune condition. Then a kind, close-to-retiring neurologist gives me his cellphone number and orders a nerve test along with more MRIs of her ocular orbit and cervical spine. He suspects something called myasthenia gravis.

When those tests all come back negative, it’s time for the big leagues—a consultation with a pediatric neurologist at Columbia University in New York City. “If CeCe was my daughter I’d want her evaluated by someone who sees much more of this than I do,” he says as he hands me contact information for Tristan Sands, MD, PhD.

Conversion Disorder: Not Faking It

The appointment with Dr. Sands is a game-changer. In advance of the appointment, he reviews her medical file. In person at the visit, he asks CeCe some questions and examines her eyelid. Then he shares his diagnosis—Conversion Disorder. Conversion Disorder (CD) is a physical manifestation of emotional distress—in CeCe’s case mostly likely social anxiety. (*Note: Over the years, Conversion Disorder has also been known as Somatic Syndrome Disorder and Functional Neurological Disorder.)

“So, it’s all in my head?” CeCe asks in disbelief.

“Nope. Your condition is real—you really can’t open your eye,” he explains in a gentle, respectful way. “All the tests that have been run so far have been normal but that doesn’t mean what you’re experiencing isn’t happening. The mind and the body are connected and in your case, your emotions are causing your body to malfunction.”

Once we’ve established that she isn’t “faking it,” he tells her about the best way to treat it. Dun, Dun Dun, DUN…working with a therapist.

This is CeCe’s aha moment. I see her body relax; her attitude soften.

As if to further validate CeCe’s experience, Dr. Sands tells us the story of another patient who is the same age as my daughter. She’d been homeschooled all her life but applied to a prestigious university program in London. Shortly after learning she’d been accepted, the young girl became incapacitated—unable to walk or move her legs. Cece’s condition was pretty rare but she wasn’t alone. There were others, just like her out there.

When I called Dr. Sands with some follow-up questions, he fills me in a bit more about CD. “What’s hard about CD is that the diagnostic criteria reside within psychiatry’s Diagnostic and Statistical Manual for Mental Disorders (the DSM) but the diagnosis is typically made by a neurologist. CD falls in this borderland of neurology and psychiatry, so patients often fall through the cracks,” he says explaining that adding mental health professionals to his staff would be a good way to remedy this problem.

“CeCe’s case was pretty straightforward to me. She received a thorough workup which was appropriate and absolutely necessary and showed that the weakness affecting her eyelid wasn’t the result of any known neurological problem,” he explains. “When I went to raise her eyelid, I felt her muscles activate to keep it closed. That’s when I knew it was Conversion Disorder.  When I tried to pry it open the eyeball rolled back which is known as Bell’s phenomenon and something that happens when the eye is being forcibly shut. But the eye being forcibly shut is completely different from the eye not being able to open.”

CD is not a diagnosis of exclusion, he says, though many doctors not trained in either psychiatry or neurology believe it is.

Conversion Disorder’s Physical Symptoms

The Genetic and Rare Diseases Information Center reports that in CD physical symptoms often follow a period of emotional or physical distress or psychological conflict—the body’s reaction to a stressful event. Some doctors and researchers believe panic attacks or trauma can trigger the development of CD. This could very well have been the case with my daughter. (Remember the ambulance?)

“There have been fMRI studies that have looked at the part of the brain that lights up in people who experience agency with voluntary movement. In patients with CD that part of the brain is just silent,” Dr. Sands explains. “[CeCe] was not experiencing her eyelid’s failure to open as voluntary in any way. She and the young lady who couldn’t walk were both experiencing a form of paralysis that can improve with psychotherapy.”

Psycom editorial board member Jean Kim, MD, a psychiatrist, experienced it herself. She told me about a stressful time in her life before she started medical school when her vision temporarily changed—it became blurry and made it difficult to see. She also pointed out something else that could have had an impact, too.

“There’s something about the role of being sick that people with CD are seeking on an unconscious level,” she says. “It might be because they subconsciously feel neglected and are so disconnected with their internal emotions they don’t know how to access or discuss them.”

Is Attention Seeking Behavior A Mental Illness?

I’ve often wondered if on some level CeCe enjoyed the attention she received during that time. Could it have been an unconscious attempt to get noticed? A way to distinguish herself from her brother and sisters? Grey’s Anatomy was her favorite show, and she was also a devoted fan of nearly every other medical drama on television. My mom, a registered nurse, told CeCe about the many rewards of nursing and showed her how to use her stethoscope and blood pressure cuff. At the local hospital where CeCe volunteered the nurses there encouraged her, too. Caregiving seemed to be her thing—finally, an area where SHE could shine!

Mental Health Recovery

In the end, CeCe was the key to her recovery. She had to accept her diagnosis. She had to want to get better and she did.

“Research shows that one of the best predictors for good outcomes with therapy is the patient’s willingness to accept the diagnosis. It’s the first step to getting better,” Dr. Sands told me.

Stress management and hypnosis can also be effective treatments for this unusual condition. Depending on the physical problem some people also need physical or occupational therapy. For my daughter, therapy did the trick once she started to participate in a meaningful way.

Within weeks of meeting with Dr. Sands, CeCe’s eyelid issue resolved. Remember that wedding she was excited about attending the week of the suicide scare? With sparkly eye shadow that complimented her lacy pink dress and plenty of mascara, she attended the wedding and had the time of her life. Singing and dancing with BOTH eyes open!

It was gratifying to see her improve and watch her grow from the experience. Today, Cece attends college where she is studying nursing. A few years from now I have a feeling that what she went through will make her one helluva nurse.

Mental Health Care Should Be Routine

When it comes to treating mental health, this country operates in triage mode. We put out fires instead of working to prevent them. Our nation is in crisis. Suicides are at an all-time high. How many more people must die by their own hand before we fix our broken system? Prioritizing mental health is the way to reverse this dangerous trend but we need much more than lip service.

Treating Mental Health Like Physical Health

As Dr. Kim told me, treatments for the mind and body shouldn’t be separated. “True healing in the body doesn’t happen without input from the head and help from the heart. They all work together and should be part of the same toolbox.”

I couldn’t agree more.

Up Next

My family was lucky to have good health insurance and access to good doctors. Our experience is why I’m so passionate about Psycom’s mission to make an annual mental health exam a reality. The time is now—to ensure every person in this country has their mental health thoroughly evaluated, at least once a year, by a licensed provider.

In the same way many of us get annual physicals, Psycom wonders if annual Mentals (a yearly mental health exam) should become routine.

To raise awareness—and build momentum—for this initiative, Psycom and Psycom PRO, our sister website for clinicians, assembled a panel of experts across a variety of specialties. Together we’re rolling out a series of reports on various aspects of the idea. Part 2, What If We Put Mental Health CARE First?  lays out what mental health care for all could look like. Part 3, coming in September, will showcase progressive programs, and innovative workplaces that are leading the charge.

To learn more about what the docs think, read “Should There Be an Annual Mental Health Assessment?” on the PRO side.

In the meantime, if you’d like to get involved or can help by connecting us to resources, contacts, or in other ways, email me at agault@remedyhealthmedia.com.

Let’s get mentally well together.

Thank you.

Last Updated: Sep 8, 2021