Functional Neurological Disorder = "I Don't Know"

I was downstairs with my 11-year-old granddaughter watching a movie and she got up to go upstairs. I noticed she was limping heavily. I hadn't noticed the limp earlier.

She came back down the stairs amid commotion. I looked over at her and there she sat, on her butt, on the second-to-last stair. I asked her what had happened, and she told me she'd fallen down the last couple of stairs.

The limping that followed was… well. Nothing short of spectacular.

Lucky for me, as her grandparent, I don't have to discern whether or not the limp was real or an attention-grab. She got the attention, the cuddles, the "I'm sorries" and "do you need ice" and all the things that helped her know she is loved and cared for.

But most important, I believed her. I validated her experience and pain. Hell, I didn't see the fall or the one earlier, so how would I know? I took her at her word because that teaches her basic human decency and respect. It shows her that she matters.

Her mom, my daughter, handled it a different way because she's the mom, and for whatever reason, my granddaughter's limp resolved rather unspectacularly the following day.

However, the one thing I do know about how my daughter handled the hurt ankle?

She believed her daughter, too.

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The Point of Care

Now, my granddaughter might have tweaked her ankle and that can hurt. But it's not serious, it resolves. My job, as I see it, is to show her that I'm a soft, safe place to land when her inner and outer worlds collide.

When my daughters were young, there were days when they wanted to stay home "sick" from school. There were days that their puffy, watery eyes, fever, and other physical symptoms made that an easy call. There were other days that were less clear.

A fight with a best friend or being reprimanded by the teacher, a test they weren't prepared for, all were considered when they told me they felt too sick to go to school. On those days, if I let them stay home, I made it a learning experience in one way or another, not a punishment. Never a punishment.

It's not difficult to discern when a child needs attention and care v. care and attention.

The former is a differentiation every parent learns to navigate based on each individual child.

But the latter is a no-brainer. When your child is sick, you care for them, which requires your attention.

A child who's struggling emotionally or who needs their parent's reassurance because the external world has thrown them some particularly fast and painful curveballs needs that care, even if it includes missing a day of school.

As a parent, it's our jobs to pay attention, care, then do our best.

In either case, the "care" piece is vital.

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Being Heard

Yesterday I went to an audiologist for the first time ever, even though the ringing in my ear has been steadily progressing for 2 years. At times it's debilitating, and it's not getting better, it's getting worse.

I showed up and the doctor didn't have a shred of information about me other than my name, and the fact I was there for a tinnitus eval. He wore some type of hearing aid himself.

After greeting me and introducing himself, he said, "Tell me what's going on."

I told him things I thought were relevant, including head traumas, some family ear issues, and the current and past medications I'd taken that I knew could impact the ears.

We did some standard hearing tests and then he told me that the ear is our smallest organ, and it is sometimes the first "red flag" that something more serious* is going on.

I mentioned the medications I'd been on, the misdiagnoses, and the subsequent brain trauma during and after withdrawal. He didn't seemed the least surprised. In fact he told me that medications—"chemicals"—were the most common cause of the type of tinnitus from which I suffer.

This doctor teaches continuing medical education classes at local med schools about medication interactions and the damage certain drugs cause in the human ear. He told me he was shocked at how little MDs know about medications. After one such particular lecture, an MD came up to him and said "I've been practicing medicine for 20 years and had no idea…"

Gosh, why doesn't that surprise me.

This audiologist was compassionate, informative, personable, caring, and I had his full attention.

He didn't ask me, not once, if I felt depressed or anxious. He didn't ask me if I had any childhood (emotional) traumas that could have possibly contributed to the ringing in my ear. He didn't ask me if I was SURE I could hear the incessant ringing.

Who would fake such a thing just to get attention?

Which brings me to a little-known French physician and psychologist named Dr. Paul Briquet, MD, who practiced medicine in the mid-1800s.

According to author Theodore Millon:

"Briquet showed great sensitivity in going beyond the crude medications of the day to employ a psychotherapeutic approach to his patients' difficulties." - Theodore Millon, Masters of the Mind (2004)

You see, Dr. Briquet, bless his heart, was the father, so to speak, of somatic illnesses.

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Deciding who and what is "normal." The DSM crew. Photo credit unavailable right now.

While I'm sure the medical profession breaks its arm every day, patting itself on the back for asking us how we FEEL about Life as we wheeze, shake, cough, or limp our way into their offices, I'd like this to be crystal clear:

You don't get a medal for showing up, physically, emotionally, and mentally, to do your jobs.

It's your job to care, but it's also your job to pay attention to the care you give, and if I can figure out which one of my daughters was really sick versus one trying to get out of a math test, you would think your medical degrees could help you figure out that basic human skill.

There is no "payoff" for people who have been harmed by iatrogenesis. It's a hindrance to our lives, our livelihoods, and our physical and emotional health dealing with you. I avoid it at all costs, which is also a fun and brand-new way to "tell" if someone "suffers" from hypochondria.

From the Wikipedia article, a summary:

• Hypochondria is characterized by fears that a minor health issue could be serious (*like tinnitus? Hm.)

• Hypochondriacs are preoccupied with their health and often "self-diagnose."

• Hypochondriacs disbelieve what doctors tell them and often distrust their opinions.

• Hypochondriacs require constant reassurance from family, friends, and medical professionals that they are healthy.

• Hypochondriacs feel safe going to doctors' offices or hospitals and would visit them obsessively.

At least this is what they used to say about them. Now? Pay attention to these last three because these are relatively new.

• Hypochondriacs are afraid of people in the medical profession.

• Hypochondriacs sometimes completely avoid medical facilities and doctors.

• Some hypochondriacs "never speak about it."

Here's a helpful graphic:

Image courtesy of Heroes' Mile

So… preoccupation with ill health because THEY ARE ILL, an inability to find actual healthcare, an inability to process the constant dismissals from the medical community leading to distrust in the entire system despite the presence of good, caring practitioners.

Then, after being traumatized by it enough times, we avoid it like the plague.

Textbook hypochondria? No. Textbook response to Complex PTSD from iatrogenic harm.

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Care, Attention, Attentive Care

So I went into a 20-minute wormhole into the term (and history of) hypochondriasis.

No, I'm not going to link it for you because if you've ever been ignored, dismissed, invalidated, or given the diagnosis of FND, functional neurological symptom disorder, or conversion disorder because a doctor didn't show up to their jobs with 100% of their care and attention, it will just piss you off like it did me.

I wonder how many seriously ill people suddenly got better after a good, long hug from Dr. Briquet, and how many went on to die of a serious illness he didn't have the ability, or knowledge, to test for.

I know how many people get diagnosed with conversion d/o or FND after a less-than 20 minute face-to-face with a new doctor who doesn't know their gluteus maximus from their olecranon.

The limitations of modern medicine are forgotten in its advances in trauma care and infectious diseases. But there is more, exponentially more, we do not know than we know, and how utterly arrogant to assume otherwise.

I have a family member who went limp while walking down the stairs. She had been given severe brain damage while in the hospital after being put on a 4-month IV-drip of an antibiotic that's known to cause severe CNS damage. You read that right. Four months for an infection she sustained in the hospital itself.

When she went limp, she couldn't speak, either. Her husband rushed her to the ER while on the phone with her brother, a physician, in another state.

After spending less than 30 minutes in the ER, the symptoms began to resolve. The nurse told her it was likely an anxiety attack. They told her to stand up and go to the restroom while she sat, slumped in a wheelchair. She told them she still couldn't walk.

As a young mother of three children, one special needs with severe disabilities, the last place she wants to spend her time is in the ER, let alone in bed for the rest of her life. But that's where their "care" put her.

This beautiful, promising young woman was debilitated by a lack of information and lack of care and attention. She's constantly seeking answers, doing her own research, because once she admitted to feeling anxious about her pregnancy while in a doctor's office—since the last one had almost killed her—that label has followed her every healthcare move.

What exactly has to happen to her before they take her seriously?

FND, Functional neurological disorder, is MD-speak for "we don't know what's wrong with you." Even more appalling, it's "we don't care. You don't deserve our attention."

I wonder what that would look like as a parenting strategy?

So if you don't know, Doctor, find out. And if you don't care enough to find out? Quit your job. You don't deserve the word "care" anywhere near you.

The first FND: "We don't know."

The second: "We don't care."

The third: "Go away or we'll make you go away."

Personally, I avoid medical doctors as much as possible. My family member is totally dependent on them because of her son and what they did to her. She can't speak out. She "goes away," she dies, and they know it.

Appalling doesn't even cover it.

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In closing, let me be clear.

I have never met anyone who fakes their symptoms to the point of incurring medical debt, agreeing to take medications that cause more harm than good, joining clinical trials out of desperation, or just generally taking time out of their lives to go to a busy doctor's office to get "validated" because their parents didn't believe they were sick, or they don't have anything better to do.

Say it with me: "FND means you don't know."

Patients, say it with me: "FND means they don't know. "

FND = IDK

And Doc? If your patient's tests come back normal? You're not doing the right tests. If they still come back normal? You're missing something or there isn't a test that exists yet for your patient's brand of illness, so here's your next move.

Ask them what's going on.

Care. Give them your attention then hear them. Believe them, us, because we're all you've got. WE are your teachers, because what you learned in med school was obsolete about 5 minutes after you graduated.

If you don't believe us when we tell you something's wrong and you defer to an FND? That means You. Don't. Know. And now we, your patients and teachers know you don't know, and all the good Docs out there, your colleagues? THEY will know you don't know.

Your patients are your most accurate sources of information and finals are coming. If you don't believe us, you'll fail.

What does that look like?

You'll see. (**See below)

And if you're an MD who can't tell the difference between 'attention-seeking' and someone who is genuinely ill? You're not qualified to be a parent let alone practice medicine, so please avoid both.

You clearly don't know what the *@$# you're doing.

Any questions?

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** Healthgrades is a site that allows you to leave a review of your healthcare experience. Google reviews are also good.

So, here are some important tips for you if you choose to leave a review of a medical professional.

1. No ad hominem attacks. If they were assholes, try to explain the specifics, sans the word 'asshole.'

2. Choose specific examples and be as clear and factual as possible.

3. Avoid being petty, vindictive, and if even one positive thing happened in that office? Share that, too.

4. Write it in a Word doc and spell check. It's ridiculous how easily bad reviews can be dismissed if your grammar is poor or your spelling is atroshus, attrochuss, er, atrocious.

5. Avoid hyperbolic language. There are very few "always" and "nevers" in an exchange with someone. Lean toward fairness, give the benefit of the doubt, and absolutely follow the 24-hour rule. Antiquated, yes, but it keeps you from making a fool of yourself.

6. If you're too angry to see, you're too angry to leave a review that will be considered by other people.

This is the power we have as patients, now. If you abuse this power by leaving reviews that speak more to your character (or lack) than the character of the medical professional you're reviewing, we all lose.

Use this power wisely, fairly with grave attention and care. This is someone's livelihood, and it needs to be said here that in leaving reviews, it's a reminder to our healthcare providers that WE are their livelihoods. But also, at some point, our lives will be, or are, in their hands.

Remembering these things and having a healthy respect for them will, I believe, change the tides and balance of power in healthcare, but only if we behave with integrity. Doesn't matter if the doctor didn't. Don't prove them right by behaving according to their misdiagnosis.

Be better than that.