What I Want Others to Know About Conversion Disorder

I have a less well-known condition called conversion disorder. It started a year ago, when after a very traumatic experience, I had a panic attack. I’ve experienced panic attacks for years, so I was used to the trembling, shaking, sweating, hyperventilation, numbness, etc. In this case, I remained quiet for about 10 to 15 minutes as I walked to the car where my mom was waiting for me. I teared up a bit.

I got into the car and sat down. “How did the meeting go?” she asked me. Oh, well, it was a disaster and I felt absolutely anxious and I feel upset and useless and hopeless. Then I saw that all of that — the things I had elaborated in my mind as the answer I was supposed to give to my mom — wasn’t coming out of my mouth.

“What’s wrong?” she asked me. More and more tears started to come down my cheeks. I hyperventilated again. Come on words, come out of my mouth.

Nothing.

“Do you hear me? Do you understand me? Breathe.”

I get you, I understand you. I have a whole answer elaborated in my brain but it won’t come out. My mouth doesn’t answer. My mouth is offline. The wire that connects my mouth and brain is broken. Oh God! I thought, as I only managed to point to my throat with a finger and then move the same finger sideways, like saying “no.” Then I pointed to my head and gave her a thumbs up.

“You understand me but you can’t talk? Right?”

I nodded.

Neurological exams, ER visits, MRIs and other procedures — and everything was fine. My system was fine. My brain was fine. Still, after days, I only managed to say a few words, stuttering and with the weirdest accent. When I could say two or three words together, I messed them up — I said the wrong pronoun and omitted some letters of the word.

Neurologists, internists, my psychiatrist and psychologists all agreed: It was a conversion disorder. It’s basically when you have the symptoms of neurological damage without actually having the neurological damage, caused by a psychological factor. Since then, my ability to speak has come and gone. I’ve gotten to a 95 percent recovery where the only thing missing is the pronunciation of the letter “R.” Still, I’ve had all kinds of crises that have put me back to square one many times. It has been a year of learning to speak and learning I can lose that ability in a second.

As much as I have to say about it, I would like to say five things in order for others to learn and be more empathic:

1. I’m aware of everything. I’m aware of when I lose my voice, of when I pronounce things the wrong way, of the fact that I have a funny accent like I am from another country. I know when I wake up and have lost progress. I know. You don’t have to point it out.

2. I’m not faking it. No, I didn’t decide it. Why would I? I can’t fake it, as I can’t un-fake it. I won’t start speaking perfectly fine in a second just because you tell me “try speaking normally.”

3. It happens with other symptoms. People may become deaf, blind, paralyzed, unable to move a part of their bodies and more. It happens to other people who lose a neurological function but their system is OK.

4. There is no cure. From a psychodynamic approach, it happens because your body is compensating in a symbolic way over a psychic conflict you’re experiencing. If you lose your speech, then you are withholding a lot of things to yourself, therefore you should try speaking your mind and being open. Been there, done that. It helps, but it doesn’t get you back to how you used to be. And for how long? It can sometimes last days, months, or a lifetime.

5. It’s real. And I can’t emphasize this enough. It’s freaking real. The loss of speech or of mobility or of sight is real. Even if you don’t have any neurological damage, you feel the symptom as any other patient. The cause isn’t important in defining how truthful or valid your struggle is. I have a grandma who had a brain stroke and when she lost her ability to speak, she went through everything I’ve been through in the past year. In fact, she gets me like no other.

And a bonus: Just because you don’t get how something like conversion disorder is possible or real or how it happens, doesn’t mean it isn’t happening. So if you’ve got nothing nice to say, don’t say anything. We’ve probably all tried everything: physical therapy, exercise, psychotherapy, medication, meditation, art therapy, relaxation… and here we are.

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Getty image via alien185