This is me–This is my life–NVLD

I’m listening to this podcast: Is it You, Me, or NVLD? by Linda Karanzalis, MS, BCCS.

I’ve read a lot about NVLD over the past 20 years, but just hearing it all in one place is tremendously validating, because–as the person doing the podcast says–it’s ignored by the DSM and doesn’t get proper research or help for people suffering from NVLD.  She also has NVLD herself, and knows from personal experience what it’s really like, not the detached view of a researcher.

Because it’s not in the DSM, despite being different from other “official” disabilities like autism or dyslexia, people don’t recognize it or excuse behaviors.  How many of you have heard of autism?  How many of you have heard of NVLD?

The best way I can describe it is “It’s sort of like autism” because people know what that is.  But that brings up images that don’t fit what we’re dealing with.  We’re not, for example, the kid so overwhelmed by sensory input that he has to sit and rock.  Because we don’t have obvious problems, people don’t understand, and we get terribly misjudged and rejected continuously.

I’m now going to vent a bit, including bad language.  People with NVLD, or who know somebody with it, might find this part validating.  People who just wonder what NVLD is, may want to skip this part.  If not, be warned.

But when you read my blog again, Richard and Tracy, because I know you will, it’s also for you.  And for anybody else who’s ever bullied me over the years.  No, I wasn’t making any of it up, I wasn’t able to “change” to suit you, so FUCK YOU Richard and Tracy.

Everything I’m hearing in that podcast is me.  For example (and all these examples are taken from ones given by the podcaster) :

Yes, I identify with a lot of the same challenges faced by people with autism/Asperger’s, but I’m not content to just be by myself all the time.  I do engage socially but keep getting rejected ALL MY FRICKIN’ LIFE.

Yes, people say bad things about me when none of them are true.

Yes, people treat me like I’m just being defiant, or rude, or mean, or get upset when I ask questions, or I get upset because somebody said something but later say they didn’t say that or mean that.

Yes, I have trouble with someone getting upset with me because my thinking tends to be literal.

To this day I feel weird watching a pot because I know it won’t boil until I look away.

Yes, people have tried to manipulate me, and I tend to stay in relationships (of any type) for too long because of either needing help (since I have these issues that make me dependent), or the desperate need by NVLDers for friendships.

I’m not sure, but wonder if certain times in my life where people got mad at me were because I missed that their words did not match up with their nonverbal cues.

FUCK YOU Shawn, who said all sorts of horrible things about me and my character after seducing me, and refused to date me because I wasn’t extroverted.

Yes, I have trouble changing plans even when it’s for something fun, or at least I did when I was younger.  (I’m more flexible now.)  Boyfriends actually chided me for this.  One called me a party pooper.

FUCK YOU Phil’s flying monkey friend who scolded me for not being extroverted and participated in Phil’s attempts to isolate and control me.

So many people have treated me like a baby or I’m irresponsible because I’m afraid to drive.  But when I did drive, my fears were reinforced because my learning challenges caused all sorts of near-accidents and getting terribly lost and other problems.  The podcaster says that most kids with NVLD are scared to learn to drive, unlike their peers.  So FUCK YOU Phil, who endlessly bullied me because I wouldn’t drive, and refused to take me places, so I couldn’t go but still needed to.

Yes, I’ve been suicidal.

Yes, I still get bullied, still hear people laugh at me or make snide comments.  Some I can’t ditch, some I’ve distanced myself from or dropped, some are people in situations where you can’t really do much about it.

Yes, I have trauma from this, and PTSD from all the bullying I’ve gotten over the years.  Rejection Sensitivity Dysphoria sounds familiar, though I’m not sure it’s that extreme.  I can get very angry, and sometimes I express it and get punished, so other times I bottle it up and writing becomes my only outlet.  This is why I post things here, online.  It’s also why I occasionally use cuss words here online, because I never do that in real life speech.  It’s release but violates social rules.

Yes, COVID has been easier for me because I’m already used to only limited social contact.

Most of my teachers were great, but some of them talked down to me, called me babyish, said things like “You’re the only person who never makes noise when someone is talking to you,” said I was behaving wrong or didn’t put my hand up or participate enough or apply myself enough.  One put red marks all over my papers saying I was doing it wrong, even though not only did I have NVLD to deal with, but I was also trying to understand directions in French.

Then there was the supervisor who told me I had to be more sociable because people were “scared” of me.  I’m a kind, gentle person with strict rules on how to treat people, so this was ridiculous.  Executive functioning combined with a long drive and one shared bathroom left me with little time to socialize before work.  I got validated, however, when the owner of the company said people were socializing too much and were supposed to be there to work.

Yes, the podcaster says you can diagnose yourself, pointing to the fact that it is very expensive to get it professionally done and it isn’t officially recognized.  She sees that we’re not making ourselves into victims with the label (FUCK YOU again Richard), because she says it’s a relief to find this out.  It helps you move forward.

She says to get rid of “friends” who don’t support you or believe that you have NVLD, because they are toxic to you (once again, FUCK YOU Richard and Tracy).

Oh yeah, and on her website I see she got stomach ulcers from the stress of school.  So did I!

She described the difficulty in NVLDers finding and keeping friends.  This drives us, she says, to hold onto relationships that are bad for us.

This is also, by the way, one of the biggest reasons why I am so against people who say opposite-sex friendships for married people are VERBOTEN.  If I believed that, I’d have very few friends at all.  I don’t usually befriend males who are, like, captain of the soccer team or a model or anything like that.  They are the geeks, the nerds, the ones who go to the comic book stores at age 35.  They are ones who already understand what it’s like to be an outcast.  Or maybe they’re just an introvert, but that has its own social challenges in Western society.  They “get” me instead of making fun of me.  They’re happy that I “get” them.

And when that happens, when we have things in common and get along, I don’t care if you’re 15 or 20 years younger than I am (that age group is now pushing 30), or if you’re 10 years older than me, or if you’re male or female.  Friends are rare and must be valued no matter where they come from.  So I will fight you to the (non-literal) death if you tell me I have to give up my friend just because he happens to be a guy and I happen to be married.

So that’s how I identify with the traits and observations put forward in the podcast.  I recommend giving it a listen.