Functional Neurological Disorder/Conversion Disorder

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Functional Neurological Disorder/Conversion Disorder
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    Why don’t they care?

    This requires some background. I was diagnosed with FND (Functional Neurological Disorder) in 2017. For those not in the know, that means that the emotional portion of my brain (specifically the amygdala) has a very strong pathway connected to my involuntary functions, brain stem, speech and processing centers, and motor reflexes. My NeuroPsych thinks I was actually born with FND (usually develops due to trauma, often complex trauma in young individuals), meaning I’ve never been “normal”. But we didn’t figure any of this out until I was 33. Until I’d been taking 22 pills every morning for a host of diagnoses I didn’t actually have and the symptoms of which weren’t getting better. Doctors accused me of lying, family got upset, all of which stressed me out causing, you guessed it, more symptoms. We figured it out though, so everything should be fixed since we know what to treat right? Uh huh. Show me a life without any stress and I’ll ask what time the funeral is. I’m getting things together(ish), I’ve accepted that disability is just where I’m at. I have generalized anxiety disorder, social anxiety, and complex PTSD, great additions to FND. My dad at the time is dating who would become ex-wife number three.

    Dad loves me in his way, but untreated bipolar paired with Narcissistic Personality Disorder (NPD) doesn’t create the safest or stablest of environments. Their marriage imploded, because she was unstable. Anyone who attacks someone like a monkey clinging to their back and then threatens their daughter to try and force them to do what she says; unstable by my definition. Out of a year of marriage, they were together 3 months. I’ve always been a daddy’s girl, even once I saw what was happening, how damaging our relationship could be to me. So I supported him through it all. That was three years ago. She walked back into his life this spring and apparently I’m supposed to just forget it all. Pretend she’s a completely different person, forget that she put him in the ER, forget the abusive phone calls and voice messages she left on my phone to try and get at him, forget that she threatened my life if he didn’t do what she said.

    I put a boundary in place. One year. If she’s truly changed, then she’ll still be that same person a year from now, and I’ll feel safe with proof. One year with no fits, no attacks, no suicide threats or arrests, and no asking for money. That’s what the first marriage felt like, her gold digging. If she loves him, then she loves him for him and doesn’t need his money. Except he’s suddenly constantly broke. A man who has a steady monthly income that’s half what I live on in an entire year, is strained for cash. Then he starts pushing. “She says hi.” No. I said no contact. “Can’t you just say hi over the phone?” No. I said no contact. “You’re going to lose your relationship with me. I hope you understand the consequences of your actions.” This is the consequence of her actions. She threatened me, attacked you, made me feel unsafe. Now to feel comfortable, I need proof of her growth. That is a consequence of her actions. “You’re shifting the blame, you need to take responsibility.”

    That was when I pointed out that a big part of this year is because I need to protect myself. I’m overweight, making me 5x more likely than the average person to have a heart attack. I have an irregular heartbeat, making my heart more likely to have a health event. I have FND, making me 10x more likely to have a stress induced heart attack. I have severe anxiety and complex PTSD, meaning I jump and react 100x more than the average person to stress (these numbers are from my doctors). I HAVE to protect myself. I had three major seizures last Friday night because of a disagreement with him over this very topic. When I reminded him in that conversation that it would harm his relationship more if I fell over dead of a stress induced heart attack because I didn’t put that boundary in place, he thanked me for reminding him that I have a serious neurological condition because it’s easy to forget. I walk around with a stress noose around my neck every day and it’s easy to forget?! Today when I told him about the seizures, after he pushed me to talk to her, I was told that I was making a big deal out of nothing.

    Nothing. My health is nothing to him.

    This is where my topic title comes in. Why doesn’t he care?! I’m a former step-mom to a kiddo who turns 16 this fall. I’d sacrifice myself for my kid in an instant (and almost did one 4th of July when his dad messed with fireworks). His mom granted me mom status after I left his dad because I “did more than his dad ever did for him”. How do I understand what a parent should be when mine doesn’t care in the slightest? I’m not saying he can’t have a relationship, I want him to be happy. I didn’t even say he couldn’t have this relationship, I only asked that my boundaries be respected. Why doesn’t he care?
    #FunctionalNeurologicalDisorder #CPTSD #AbuseSurvivors #ComplexPosttraumaticStressDisorder #Anxiety #SocialAnxiety #frustration

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    Good doctors and a good birthday 🩺💜🎂💜

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    2 Steps Forward 6 Steps Backwards

    Do you ever feel like every time you make any progress with your illness/disease you win a little then it knock you so much father back that you will never get back to were you were before?

    So I have FND which means my nerves and brain function abdominally and communicate about as well as toddlers playing the telephone game. Add in a sprinkle of Tourettes Syndrome and Sensory Processeing Disorder, Migraine, Dyskinesia, Dystonia, and we are currently exploring epilepsy. All this results in me being confined to a wheelchair at least 85% of the time and need to be supervised if I am not. Along with eating difficulties, communication problems ect...

    I have to go in for occupational therapy and physical therapy once a year to help me maintain quality of life. Sometimes we add speech or cognitive to spice things up if I need it . All these therapies are great and can act as kinda a filter on how to adapt my life to limitations and give some good ideas on how to make life easier within my limitations my body has placed on me. However it always feels like we make a little progress with them and once I "graduate" out of them (stop making progress usually after a the first 2 months) my body starts to decline again even though I countue to do my home programs (hey I want as much quality of life as I can get I mean I turn 20 in the fall I will take what I can get). This happens with me staring to fall more, my hands start to get weaker, I drop more weight, ect.

    2 steps forward 6 steps back.

    Every time. It seems like I am on this never ending loop of yes some progress. Whap out of no where I get worse ...

    2 steps forward 6 steps back.

    It's like this dance me and my body play. Oh you gonna work to try and get better. Sike now your worse enjoy the new wheels.

    2 steps forward 6 steps back.

    Around and around we continue this dance and we can't seem to figure out why this downward spiral keeps happening. Like I'm not gonna keep fighting for my quality of life but man would I like to stop this dance or at least hit pause for a bit.

    2 steps forward 6 steps back

    It's exhausting. I just moved and my new pcp asked if I had made any progress on getting better and it hit me that no actually I keep getting worse and my symptoms keep getting more debilitating as time goes on. So now we redo all the testing and redo all the things to see if anything has changed...

    2 steps forward 6 steps back.

    Anyway I'm just excused with everything. I'm still gonna try and still gonna give it everything I got which honestly isn't much at this point. Still gonna give it a go. Got to continue this dance in homes that some day it will be 6 steps forward and 2 steps back instead.

    #FunctionalNeurologicalDisorder #ChronicFatigue #ocupationaltherapy #PhysicalTherapy #notmakingprogess

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    Sunshine 🌞

    <p>Sunshine 🌞</p>
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    Poem

    Laying in my chair wishing this was a nightmare wishing my episodes would go away and walk again one day sometimes I hurt from head to feet I feel useless and week I Stay inside most time scared to leave because of having episode from my fnd l lay here a wake wanting this to go away and have my life back some day and not feeling useless or week and get back to being me