One teen’s journey to self-discovery through psychogenic non-epileptic seizures

Listen to Franci van den Berg's story.

Podcast Transcript

At 13 years old, Franci van den Berg was already a driven student and athlete in South Africa. She attended elite schools and pushed herself to succeed. A few weeks after starting high school, Franci began having seizures. She was diagnosed with anxiety and prescribed medication. A few months later, her cousin was killed by a drunk driver. She said it all went downhill from there.

Franci:

I don’t remember a lot emotionally about the time my cousin died. My mom’s side of the family is very close knit so obviously it was a big thing for the whole family. I remember sitting on the couch and everyone was crying and I wanted to cry but I couldn’t, because I was so drugged with antidepressants.

There was a time when I had 14, 15 seizures a day. After a seizure, it feels like you’ve just jogged 22 miles and you want to die because you’re so tired. I sometimes wonder how did I get up every time? How did I wake up in the morning and go to school, with the possibility of knowing that by 9 o’clock I’m probably going to come back home because I’ve already had three seizures.

Franci was diagnosed with PNES. She was going to counseling, but it wasn’t easy finding a good fit. She had three failed relationships with psychologists and psychiatrists before finding success on her fourth try. The false starts delayed her treatment, and they still trouble her.

Franci:

In a sense I feel like it’s the psychologist’s responsibility to say “Listen, I don’t think this is working. I think maybe you should see someone else; I don’t think we have the right relationship.” I didn’t know anything else. I was desperate for help. I’m not clued up with any of this stuff; it’s not my job to be clued up with it.

I always give 150% and I don’t do anything less than that. So something I had to learn was to choose my battles. I like to stick up for people who can’t stick up for themselves, and sometimes I get myself into really sticky situations. Something my psychologist taught me is to get out of your tree and look at the situation from a higher tree or a lower tree; just get out of your own tree. Is the battle worth fighting? Maybe, no, yes? If it’s yes, then go for it. But if it’s not going to help me in the next 10 years to change the world, it’s not that big of a battle to fight.

I learned to get perspective on what’s important and what’s not — you don’t have to win at everything; you don’t have to be the best. That took me 5 years to figure out, but I did, and I think for a 19-year-old I know a lot more about myself than some people who are like 40, 50 years old. And that’s why I’m grateful for PNES.

Now 19, Franci hasn’t had a seizure in nearly a year. She says the stigma of PNES was more difficult than the seizures themselves.

Franci:

I think the hardest challenge for me was not getting over PNES but the people. People thought I was faking it, I was crazy. I remember one mom spreading rumors that I was in a mental institution because I just wanted attention…

I really want to get the word out there that PNES is a real thing and I think it’s becoming more common. Stress is getting higher; there’s more pressure to succeed. I wouldn’t be surprised in the next 10 years if we’re going to hear a lot more about PNES.

More about PNES

Unraveling the mystery of psychogenic non-epileptic seizures

PNES: Diagnosis, treatment and stigma