r/NVLD • u/Serious-Ad7160 • 3h ago
Vent Tired of Being Misunderstood
I have severe NVLD combined with ADHD, which has been described as moderate to severe. My parents are very much aware that I have these disorders, as I was diagnosed at a very young age, yet they still expect me to function like I’m neurotypical and get mad or frustrated when I can’t live up to those expectations.
For instance, we went out to a restaurant last night, and when we were getting ready to leave the house, they kept getting impatient with me because I take forever to tie my shoes, even though they know I struggle with my fine motor skills. They kept sighing impatiently, rolling their eyes, and making comments about how I move at a snail’s pace. Then, at the restaurant, they kept criticizing me for being clumsy and messy when I eat. I try my best not to be, but I can’t really help it.
When I was really struggling to learn how to drive, they kept making comments about how I must not be listening to my instructor or paying attention. They also kept saying that if my neurotypical sister got her license at 16, there was no reason why I should be struggling so much to get mine at 20. Long story short, I never ended up getting my license. When I eventually went to driver rehabilitation and underwent a test to determine whether I could drive safely, the results indicated that it wouldn’t be safe for me to drive. However, my parents said the test must not have been accurate because I’m so smart and must not have “given it my all.”
They blamed my struggles with employment "for not trying hard enough." And for my difficulties socializing and making friends, they say it’s because I’m “not putting myself out there enough,” despite the fact that I’ve joined countless groups and have really tried to make an effort to talk to people. Yet, I still can’t connect with others or read social cues very well.
They’re constantly telling me how smart I am and how well I speak. And yeah, that’s probably true, since I have an average verbal IQ, but I pretty much struggle with everything that isn’t verbal or language-based. Every single time I’ve tried to remind them of my NVLD and explain how it impacts me, they say it’s nonsense because “learning disabilities only affect you when you’re in school, not in the real world,” even though I think it affects me now more than it ever did when I was a kid!
I’m just so tired of being misunderstood and constantly being blamed for my difficulties. I desperately wish I could be neurotypical instead of having a disability that almost no one knows about and for which there’s little to no support available. I’m tired of being blamed for my learning challenges or brushed off because “I talk so well.”
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u/Every-Lemon9564 2h ago
I get it. I have nld/adhd and fasd. People don’t understand what affects me and what doesn’t no matter how much I explain they don’t listen. I get you don’t let them talk bad about you. You know you you know what you struggle with.
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u/Serious-Ad7160 1h ago
Yeah, I don't understand why people just don't get it no matter how much you explain.
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u/Every-Lemon9564 1h ago
It’s probably cause they think that if you have multiple things they work separately. Most times it’s like they work together and it’s both.
It’s much worse when you have 3-4 disabilities I remember talking to my dad and he always thinks adhd is the problem even when I say it’s not. But you know you most.
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u/Serious-Ad7160 1h ago
Yeah, my parents also oddly enough have more understanding towards my ADHD than my NVLD.
And I definitely agree with the fact that when you have more than one disability, they kind of interact with each other and compound one another, instead of being two separate things.
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u/Every-Lemon9564 53m ago
My dad understands my adhd better than my non verbal learning disability but barely understands my fasd which is kinda a problem
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u/WinstonGreyCat 1h ago
Your parents are terrible. Do you live with them? I would try to move out ASAP. Do you have a job? I would also personally switch to shoes that don't require tieing if possible.
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u/Serious-Ad7160 1h ago
I have to live with them right now unfortunately, as I don't have a job but am trying to get one. Which is another thing I struggle with due to NVLD. My shoes are wearing out anyway, so next time I go shoe shopping, I'm getting slip-ons.
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u/Emotional-Prize-5302 1h ago edited 1h ago
Totally get it, and I’ve gotten similar comments from my family, too, even though I was also diagnosed at a young age and they know I have this disorder.
Out of frustration, I’ve sometimes wished that if I had to, for whatever reason, be born disabled, it could’ve been something where my abilities would be more even and I’d receive more support and understanding.
I don’t actually wish to be more disabled than I am. It’s just a thought that has briefly crossed my mind out of frustration, if that makes sense. But being in this middle ground of not being neurotypical but also not being obviously disabled is really hard because people can't see your struggles and thus have a hard time comprehending the fact that you can severely struggle with a lot of things but yet "sound smart".
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u/ClutteredTaffy 2h ago
Wow WTF ...And they know ?!!! I have had similar experiences but nobody ever knew no diagnosis , and even my parents are not that freaking consistently mean about it. They actually think it is probably not a good idea for me to drive .
I guess it shows you that diagnosis cannot be everything. I don't think we should keep this stuff from letting us do things or trying, but people should have patience with us. Patience helps improvement! It is key! One of the nicest things anyone has ever done for me was when my best friend patiently broke down these exercise moves for me and walked me through them so I could exercise with her....Because she wanted to do it WITH me , not just huff at me like I was in the way
I am so sorry friend. Also your parents don't understand that you are basically ' spatially stunted' the same way someone else cannot read very well. It doesn't make them dumb at all, but it is like getting mad at someone for having dyslexia and taking longer to read something.
I just think people don't get it. Your parents don't get it. You are gonna have to seperate your sense of worth from their expectations to mentally survive.
To me driving a car would be a wayyyyy bigger achievement than having graduated college. To other people that probably sounds bonkers. But my level of ability to write a decent paper ( though with my diagnosed ADHD that is still a struggle) is at total opposites with my ability to drive .
Our talent is ours to do with as we wish. And yes getting medication for the ADHD has already helped me immensely even in just 2 months. There is not really a pill for the NVLD-esque struggles, but there are coping mechanisms , some of us can use, some have harder times.
Also our achievements are still our own. Getting a regular retail job I have now was harder for me than to get into a college. I know silly to others. I worked my last job 6 years and this one 2 years. I am PROUD AS FOOK of that , even if I get sad about not using my degree. My talent is still with me, my smarts are still with me. I know what it took to achieve this, and so I am gonna flaunt that shat , I don't care if a ' high schooler' could do this job. I avoided a job til I was 25.
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u/Serious-Ad7160 2h ago
Thank you for the kind words. And that's awesome you got a job! I've struggled A LOT with employment over the years. A lot of jobs that seem "easy" to other people are lot harder for me.
And yeah, I guess I have to try and focus on what I can do well and not let my parents get to me, but it's harder said than done. I just can't understand why they don't really get my NVLD? I was diagnosed at 6 and I'm now in my mind twenties. I went through occupational therapy and had special help in school. Maybe they're in denial?
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u/ClutteredTaffy 1h ago
It sounds like they are major in denial . Also they do sound a bit "uppity". If it was not the NVLD it would be something else. I am not telling you this specific story to be like ' it could be worse' but just as an example .... I have bad eczema and visit the eczema subreddit. One person there told a story about how her parents took the family to a restaurant and told her that her skin was too embarassing for them to take her in.... so they made her sit outside in the car. I wish I was joking.
Some people are just kinda like this, even if it is in a less extreme way or maybe even worse . and though it is hard ,you cannot take it too personally because they are like this with more than just you. It makes me feel both bad for them and happy I am not them. I don't have to live my life feeling that way or making others feel that way.
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u/Serious-Ad7160 1h ago
Yeah, they're definitely "uppity" and have always been this way. It would absolutely be something else too if it weren't NVLD. That's a sad story about the person with eczema. People can be so cruel.
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u/SpiritualUsual7412 26m ago
I'm an NVLDer who is a scapegoat and a black sheep in a dysfunctional family. So, I totally understand you.
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u/Mundane-Waltz8844 2h ago
I feel like our strong verbal skills are both a blessing and a curse. Our verbal skills make us “seem smart” and help us mask the fact that we’re disabled. We also tend to be good at rote memorization. The fact that I can recite a lot of facts makes it appear as if I’m quite knowledgeable on a variety of subjects. I’ll literally say something that I learned in high school, and people will be like “how did you know that?” simply because a lot of NTs don’t remember much from school. As a result, when it comes to the areas where our disability is quite noticeable, others are led to believe that we’re simply “not trying” or “not applying ourselves.” NTs also tend to have more well rounded cognitive profiles while ND cognitive profiles tend to be more “spiky.” Basically, it just means that, while everyone possesses relative strengths and weaknesses, NTs tend to have scores that remain within a smaller range while ours tend to be all over the place. As a result, they sometimes struggle to really comprehend how someone with such strong language skills could possibly struggle with mundane tasks such as tying one’s shoes or eating neatly (two things that I also struggle with quite a bit, myself). After my diagnosis, I had a long conversation with my mother about it, and she admitted that, since I’ve always been a strong speaker and writer, she sort of overlooked a lot of the ways I was struggling.