I have Functional Neurological Disorder - NOT Conversion Disorder

I was incredibly happy when this picture was taken. I was also suffering from some of the worst medical symptoms of my entire life. The idea that "emotional stress" was making me unwell during an otherwise excellent period of my life is absurd. But, that's what some professionals would have me believe.

I previously published an article about my initial thoughts in reaction to being diagnosed with Functional Neurological Disorder. (Read that here.)

In that article, I spoke about how FND can be understood as a disorder of brain networks - essentially, it is the consequence which arises from the brain’s natural adaptive ability going haywire.

I also mentioned how there are other theories, but I do not believe them to be credible and so refuse to grant them the dignity of a place in educational material that I create.

My feelings towards the credibility of past theories on FND have not changed, but over the course of even my short time being diagnosed thus far I have begun to understand why it is important to not only promote up-to-date information, but to also speak out against harmful misconceptions that remain all too pervasive.

So, to get to the point:

Many people still consider Functional Neurological Disorder to be Conversion Disorder.

I think that they’re wrong.

Here’s why.

According to MedlinePlus, conversion disorder is “a mental condition in which a person has blindness, paralysis, or other nervous system (neurologic) symptoms that cannot be explained by medical evaluation” (https://medlineplus.gov/ency/article/000954.htm). Many people hold the idea that Conversion Disorder happens when a person experiencing emotional stress “converts” their underlying feelings into physical symptoms.

It was long thought that Conversion Disorders were caused by traumatic events, such as abuse (especially sexual abuse). But more recently, it’s come to be accepted in the medical field that many people are diagnosed who have never experienced serious trauma. What’s more: many people develop functional symptoms during periods of their life when things are going exceptionally well for them. This certainly casts doubt on the idea that the disorder is one of emotional stress being converted into physical symptoms.

I think that this is completely nonsensical. I believe that Conversion Disorder is an outdated concept that doesn’t hold up in light of new evidence, and I think that the continued use of the term and diagnosis is not only ignorant but is also highly irresponsible and carries a large potential for harm.

To illustrate my reasoning with one example: I was told, once, that the reason I am not experiencing anxiety or any abnormal negative emotions whatsoever is because I’m “subconsciously converting that anxiety into physical symptoms, and therefore not actively feeling it”. I might not have a doctorate, but I’m pretty sure that I don’t need one to be able to say - definitively - that that’s not how feelings work. I’m pretty sure that my ability to look at my life, identify the point where I put in exhaustive work to overcome my problems with anxiety, and recognize that after that point I began to experience less anxiety and more feelings of peace, contentment, and happiness is intact. I’m also confident in my ability to say that I was not abnormally stressed in the slightest when I developed FND, but that I actually was experiencing significantly LESS stress than at other points in my life. Was I busy? Yes. Was I dealing with changes? Yes. Was I distressed, anxious, or mentally ill in the slightest? No. Just prior to coming down with the most debilitating symptoms I have ever had, my mental health was at a long-time high.

The idea that a stranger who does not know me or my personality feels they can say after a half-hour conversation that I’m experiencing emotions that I’m somehow not aware of and converting them into physical symptoms is completely absurd.

What’s more: it’s been observed in multiple studies that functional symptoms are linked to observable physiological differences in the brain. For example, the sensorimotor cortex can be observed as having abnormal connections with other regions, and certain structures are abnormally sized as compared with those of healthy controls (Perez et al, 2018). A research group has even developed the ability to properly identify patients with functional symptoms with a large degree of accuracy based on differences in resting state networks (measured with rsfMRI) (Wegrzyk et al, 2018).

The concept of Functional Neurological Disorder as a neurological condition makes sense. It is a helpful concept that leads to treatment that works. Brand-new FND rehabilitation facilities have been popping up throughout the world since the idea’s advent roughly five years ago and are demonstrating via extraordinary patient transformations that a neurological rehabilitation approach to Functional Neurological Disorder can be highly effective, even within a short amount of time. For a patient experiencing functional symptoms, receiving a properly informed diagnosis of Functional Neurological Disorder is helpful.

A diagnosis of Conversion Disorder, however, carries real risk of harm to a patient. Conversion Disorder has traditionally been categorized as a mental illness. FND, on the other hand, is categorized as a neurological disorder. That distinction is important. Although the inherent bias to view neurological disorders as more valid than mental illnesses is largely unfair, it is still important to consider as it leads to potentially severe consequences. People with a label of mental illness are less likely to be taken seriously by doctors or other professionals, as well as the people in their lives. They are often perceived as anxious, hysterical, hypochondriacs, and all sorts of other negatively-valenced terms. People tend to inherently understand, however, that neurologically-originating symptoms are not the fault of the afflicted person.

Another thing to consider is this: even if the diagnosis of Conversion Disorder is used in good faith by those who understand that it does not mean people are malingering or being hypochondriacs, it can still create a situation of extreme vulnerability. There are the sorts of doctors who do not need such a diagnosis to write off the perfectly valid complaints of their patients as “anxiety” or “hypochondriasis”. This has happened to me in the past - when I was a teenager, I was told for several years that a smattering of truly nasty symptoms I was experiencing were due to anxiety, and that I needed to stop complaining and learn how to relax. Then it turned out that I actually have Celiac Disease, which when left untreated can cause inflammation, cell death, osteoporosis, neuropathy, cancers, and all sorts of other problems. I am okay now, but I suffered severe long-term damage which took years to heal fully as a result of doctors’ negligence and rapidity to write off real symptoms as psychosomatic. This sort of experience is common - research has demonstrated extensively that the health claims of women (Rinsberg et al., 2009) and minorities (Hairston et al., 2018) are often taken less seriously and written off as symptoms of anxiety or similar conditions.

If this is already the case, then what do people think, realistically, will happen when they label someone experiencing appearingly-unexplainable symptoms as mentally unwell?

Nothing good, I posit.

But let’s even scale it back. If you remove the big-picture consequences and speak on a strictly personal level, being told you are mentally ill when you are not just feels insulting.

When I was depressed as a teenager, receiving a diagnosis was validating and reassuring because it helped me to understand what was wrong with me, and gave me access to information and treatment that helped me get better. When I was anxious in college, receiving that diagnosis was similarly helpful. But when I developed FND, the insinuation that I was mentally ill felt like a slap to the face.

Why?

It was not a validation of my experience, nor did it explain in a satisfactory way what was happening to me, nor did it provide a real avenue to recovery. Instead, it felt like someone glancing briefly at my life, projecting their own very simple assumptions onto my complex and individual experience, and assigning emotions to me that I do not experience. Rather than validated, I felt belittled.

It was not until I sought out other opinions on FND and learned about its new classification as a neurological diagnosis that I was able to accept it. And I am not ashamed of that.

I do not think that anyone should ever be made to accept an explanation of their mind's workings that does not reconcile with reality. If one finds themselves in such a position, wrestling with the concept until experience and reality are able to fit together is warranted. Sometimes you will learn more about yourself, and sometimes you will find error in ideas.

In this case, there is nothing to be gained from accepting Conversion Disorder, and everything to be gained from realizing that it just does not fit. Through the process of learning enough about FND to decide what I thought about it at all, I gained powerful new tools and insights that have helped me to recover even when I have not had access to local treatments or even basic guidance as far as what to do. I've been able to take charge of my own life and my own health and start the long road towards recovery.

And it all started with this simple but profound realization:

I do not have Conversion Disorder. I have Functional Neurological Disorder. They are not the same.

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Sources:

Perez, D. L., Matin, N. , Williams, B. , Tanev, K. , Makris, N. , LaFrance, W. C. and Dickerson, B. C. (2018), Cortical thickness alterations linked to somatoform and psychological dissociation in functional neurological disorders. Hum. Brain Mapp., 39: 428-439. doi:10.1002/hbm.23853

Wegrzyk, J., Kebets, V., Richiardi, J., Van de Ville, D., & Aybek, S. (2018). Identifying motor functional neurological disorder using resting-state functional connectivity. Neuroimage: Clinical, 17, 163-168.

Risberg, Eva E Johansson, and Katarina Hamberg (2009).International Journal for Equity in Health. The official journal of the International Society for Equity in Health 20098:28

https://doi.org/10.1186/1475-9276-8-28©

Hairston D.R., Gibbs T.A., Wong S.S., Jordan A. (2019) Clinician Bias in Diagnosis and Treatment. In: Medlock M., Shtasel D., Trinh NH., Williams D. (eds) Racism and Psychiatry. Current Clinical Psychiatry. Humana Press, Cham