CD doesn't define me anymore. I hope this is encouraging.

Everyone's experience is very unique with FND/CD. I hope my story is encouraging to someone.

Start of CD/FND:

Looking back, conversion disorder started for me in a high-stress situation. It was the Fall of 2014 and I was in my first semester of grad school for a phD in Microbiology. I was also in my first sexual relationship with my now husband. I have a history of sexual abuse which I think made me vulnerable to CD. CD appeared as episodes of seizure-like convulsions and dissociation. It was absolutely terrifying. Full disclosure is that CD started immediately at the height of orgasm in the beginning. Then CD started to manifest in everyday life as I struggled to make sense of it and also deal with the stress of grad-school. It became debilitating. I was hospitalized over-night for tests for MS. Of course, they found no neurological damage. I went on short-term-disability from gradschool. A couple months after that, I was diagnosed with CD. It was called CD in 2014 versus FND, so I refer to it as CD.

Impact of CD:

Being diagnosed with CD, sent me into a spiral of depression and anxiety. I didn’t understand how this could be “my fault” or “my own thinking” that was causing this. I felt crazy. I was put on medication for the depression and for a short time, I also took medicine for the anxiety. I dropped out of grad school. My boyfriend (now husband) and I almost broke up. I completely frightened my family, especially my mom. I was without a job for months and when I did get a job, it was whatever I could get. I was always a go-getter, perfectionist kind of kid and I felt completely unhinged. Very dark days. I would have shaking episodes of CD multiple times of day. It even would occur in church. I became convinced that the sun brought them on, so I would hide in bed for hours.

What Worked For Me:

I started turning a corner through cognitive behavioral therapy with a therapist specializing in PTSD. The therapist would have me practice mindfulness exercises during the session. She would give me homework to analyze and rebalance my thoughts. She would give me homework to practice orgasm on myself to desensitize that trigger (I know imagine your therapist asking you to do this, lol). In a similar vein, I had to go on my grad school campus that I had dropped out of. Basically, I had to face the fears. She said in plain language to me that the trigger for my CD was fear and also attention-seeking (from boyfriend/from family/from church). Knowing my triggers and gaining mindfulness tools really helped me take control of my CD. In time I was able to get completely off of the medicines and only experience CD episodes on-occasion. I never went back to grad-school, but I did get a full time job. Family support in all of this was so key.

Today and CD/FND:

Seven years later, I would love to say that CD is gone. It is not. I still experience it occasionally on the down-phase of orgasm for some reason. It still feels like it’s totally beyond my control when it starts. Honestly, I do think there is a physical neurological component like a miss-firing of a certain nerve that starts it for me post-orgasm. Irregardless, I know that CD is not totally beyond my control. I tell myself to own it and get over it. I tell myself that my husband hates seeing me like this and that this is negative attention. I breathe deeply and focus on the present. I focus on avoiding the tip-off to a convulsion. For me, my neck gets extremely tight and I feel like if I move a certain way or relax a certain way, then the CD starts. It’s hard to describe, but basically I try to ignore the CD and pay attention to the present. The CD usually goes away within 30 seconds, and I get on with my day. I also still experience it in a truly frightening situation, like when I got into a car accident. Oh well. I’ve learned to accept that CD can occur but not let it define me anymore.

I hope this is encouraging to you. It is often absolutely awful and debilitating. But there is hope.

[MONIREN]

I control my chronic back pain, frustrating that I don't seem to have control over my symptoms. I did go off antidepressants, I don't want my mind to define who I am. You do give others hope. Good on you, for not only controlling your symptoms to a degree but reaching out to others. Take care. Moni

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Hi, I would like to add on to my own post. I wrote that it takes 30 secs for me to control a CD episode. More like a few minutes to 30 minutes, depending on the initial intensity of the CD onset. Also, if I am having a stressful season, I do have to take a second to handle everyday startles. If something really loud drops to the floor, I have to take a second. If someone pops up behind me and startles me, I have to immediately deep breath and ground myself. If there is strobing lights that I am not expecting, I have to look down and coach myself through it. It's really hard.

Be kind to yourself. ❤️