Functional Neurological Disorder (FND) Myths, Stigma & Recovery with Carolyn Sullins, PhD

Thank you for joining me, Carolyn.

Well, thank you for having me, George.

It's a real pleasure.

So I've obviously done a little bit of an introduction, but for people who don't know you, can you share a little bit more about your story?

Yes.

My story starts when I was a graduate student at the University of Illinois studying educational psychology.

And at the time, what's now known as functional neurological disorder had a very different name and connotation.

We had studied, of course, all kinds of, um, psychiatric disorders in my program, and one of them we studied was called conversion disorder, and we were told it was very common back in Freud's time when women were uneducated and naive, and it consisted of mostly women who were converting neuroses into fake physical symptoms such as paralysis, seizures, other t- types of disabilities.

And at the time, I didn't have any reason to question anything the professor said about it.

In fact, my only question was, "If this is so rare now that women are educated, why do we waste so much time studying it in class?" And then I just finished my qualifying exams, and I was looking forward to starting my dissertation and going on with my career, and I woke up one morning feeling dizzy.

Something didn't feel right.

I didn't think much of it, and then I thought, "Well, maybe I just need to get out, relax, stop studying, and just hang out with my friends at a party." That's when I noticed that I wasn't walking right.

I was having trouble picking up a plate of food.

I still thought, "Whatever this is, it's temporary." But long story short, after a series of neurological exams where they ruled out epilepsy, multiple sclerosis, Parkinson's, and just about everything else because all my tests were normal, they said, "This looks like conversion disorder." So you can imagine how I felt being a PhD candidate in educational psychology, being diagnosed with something that I was told was basically eradicated now that women were educated and it was only found in people who were mentally the R word, and that R word was not respectable or resilient.

So I re- rejected the diagnosis, which of course, when you're arguing with your doctors about your diagnosis, in this case, it only proved them right that I was in denial.

And sometimes I did question, "Well, maybe they are right.

Maybe in spite of being book bright, there's something really wrong with me." And the fact that my symptoms were very inconsistent seemed to be proof of that.

One thing that I noticed early on with my symptoms was that sometimes I could walk just fine, and other times it felt like walking on a tightrope.

I noticed that if I was really focused on, in my studies or if I was working out at the gym, my symptoms temporarily disappeared.

But then as soon as I lost focus, they came right back, and I found that really confusing.

So I thought, "Well, maybe there is some weird psychological thing going on." I started questioning my own sanity.

But what kept me going was that when I was thinking about what the doctors had said about me and what this condition meant, and when one doctor even said, "Well, you may be, you know, very intelligent, but maybe you're just naive about your own issues." But then I would talk to my husband, my family members, even my thesis advisor who said, "We've known you for years, and we know who you are, and why are you listening to this doctor who is jumping to conclusions about your personality, you know, based on some negative tests and some old textbooks?" And what I took from that was not only thinking, "Well, whatever I have, I just have to live with it.

I don't have to accept this explanation." But I started thinking about how as a student in educational psychology, I looked at my research participants, and did I have the same biases or as a field did we have the same biased methods when it came to studying people? And that actually became the topic of my dissertation.

I had just learned about something called empowerment evaluation, where instead of just treating the members of, of the services that you're studying as subjects, instead of just giving them surveys that you design with no input from any members of their community and then interpreting the results without any of their input, it was a way to really include people to the extent feasible in every step of the evaluation.

So my dissertation was on evaluating a mental health drop-in center, and it turned out that because at the time I had very conspicuous symptoms, I was not just having difficulty walking, I was having motor and vocal tics.