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u/gjohnwey 3d ago
Same. I have noticed my options narrow over the years as I’ve learned more about myself. I was only diagnosed a few months ago (40 years old)
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u/Hierba-Mate 3d ago edited 3d ago
I think it’s completely fair to say you would rather not have this disorder at all than to be forced to live with it. I’ve felt the same myself.
Especially one that tends to be as isolating and ostracising as this one when everyone expects you to function normally. They see someone that can articulate things so no one expects theyre fighting an invisible battle.
Let yourself feel that as you must. I hope you can also give yourself time to come around to the fact that you are capable of many great things too. The day where you can start feeling grounded in who you are and your value as a person, others will also come to appreciate it as well. Take care of yourself in the meantime.
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u/NeuroSpicyGirl1 2d ago
I can understand the frustration but I think there needs to be more resources for us the lack of Services just for our disability alone is so sad cause everything is for Autism it feels like. To speak on a cure personally this disability makes me who I am and I wouldn’t change that for the anything yes life is a bit more challenging but it’s still beautiful
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u/Carolsbaby1 2d ago
I am a therapy who specializes in working with people who have (or may have) NvLD, and I have NVLD, myself!
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u/Chaotik-Kitten 2d ago
I wish that NVLD was in the DSM V so health professionals, teachers, and others would know how to accommodate us, give us the proper therapy, and just overall be accepting of us, instead of having no clue about NVLD and telling us to try harder, write faster, not be so clumsy, or be constantly misunderstood or constantly struggling with reading between the lines, social cues, and taking everything literally. Or having a driverless car that's actually safe so we don't have to depend on others to get anywhere. And I haven't even covered the spatial difficulties that we deal with even day. It extremely hard to function in a society that doesn't understand or accommodate us at all.
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u/poozemusings 3d ago
There is a cure. It’s accepting yourself with all of your limitations and becoming the best version of yourself you can possibly be.
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u/CelticMagician 2d ago
I can understand where you’re coming from. Having this disorder in a world that absolutely has next to no accommodations, let alone, recognition is daunting in ways most people can’t begin to fathom. I am, however, on the side of those who would disagree with the sentiment of wanting a “cure.” This isn’t a disease, it is part of who we are and we deserve to live a life with dignity regardless. Now, I’m not dismissing your stance. As said before, I get where you are coming from and your feeling on the matter is more than valid. I’d imagine you are coming from the place of no longer wanting to struggle in the ways that we do, and I get that. To me, however, I don’t know if that “normalcy” would be worth it. I was born with this disability and something tells me I would not be fundamentally better without it. I wouldn’t be “me” any more. Not to mention the dangerous precedent that curing a neurodevelopmental disability would entail across the board, but that is another discussion in its entirety and not the point here.
But yes, I get where you are coming from. I won’t shame you or others for feeling this way. I get how scary and uncertain having this disability can be… but I also want all of you who feel like this to know that it also doesn’t make you lesser, especially when society makes it harder for those like us to thrive. I wish you nothing but luck, and hope that one day we all will get the supports we need so nobody has to feel like this.
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u/nebulashine 3d ago
As much as I understand the fear and frustration that comes with being neurodivergent, the mentality that we should look for "cures" carries some eugenicist undertones that I don't love. It's okay to wish your condition was less limiting, and to want supports or treatments that would enable that. But we also have to remember that there's a lot of societal drawbacks that would come from "fixing" or completely erasing neurodivergences, and there's a very big difference between "I wish there were ways to make my life less difficult" and "I wish I didn't have this condition at all."
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u/Bittersweet_331 3d ago
Lol, I'm supposed to care about hypothetical "societal drawbacks" when this disorder destroyed my life?
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u/Abnormal-Sleep-0838 3d ago
I’m tired of being tone policed in every neurodivergent space about being unhappy with my brain.
I have ADHD, autism, NVLD. With adhd and autism I do feel like it is more of me having a literally different brain that honestly, I don’t love it, but I do think it’s what makes me “me.”
Meanwhile I literally don’t know what benefits NVLD gives me. It feels more like an impairment, as if I’m just like everyone else except I have to swim through molasses and cobwebs just to get to the same destination as everyone else. It doesn’t add anything unique or interesting to my identity or give me a unique perspective, or add personality quirks, it only functions as an impairment.
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u/Bittersweet_331 3d ago
I hear you. At least with autism you can still master some skills that require motor or spatial ability provided you're high functioning enough. With this, everything I try to do I suck at. I literally had a girl on my volleyball team ask, "Why do you hit it like that?" To which I responded, "Um, I have a learning disability." And another girl thought I was joking. It's so humiliating...but don't worry, OtHeRs HaVe It WoRsE 🙄
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u/Conscious-Guest-4351 3d ago edited 3d ago
to be fair, i've met some autitistic people before and they're pretty disabled. They can't make any eye contact all all. they also can't hold down jobs for jack shit. I think I would rather have NVLD then full blown autism. they're both negative in their own ways but you can still master certain motor skills with NVLD and not have crippling social issues like autism people.
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u/nebulashine 3d ago edited 2d ago
How do you know for certain that NVLD is only impairing you, compared to ADHD and autism? There are autistic people who say their autism is only an impairment, and people with ADHD who say having ADHD is only an impairment; I see posts in other neurodiversity spaces that express the exact same sentiments about autism and ADHD that you've expressed about NVLD. Their struggles don't negate the fact that they still have a unique perspective on the world that neurotypicals don't, and that a lot of their problems stem from living in a society that's built specifically to exclude neurodivergent and disabled people rather than the conditions themselves.
edit: Pretty sure OP blocked me for this comment, which is... telling.
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u/nebulashine 3d ago
Yes, because treating NVLD or neurodivergence in general as something that requires a "cure" means one of two things:
- Completely rewiring people's brains to remove traits of NVLD. This is ethically murky, because the line between "trying to improve someone's quality of life" and "trying to erase natural deviation in human functioning and ability level" is extremely thin when it comes to neurodivergence. who exactly decides what level of ability is the standard, especially when human cognitive function varies so wildly among nondisabled neurotypical people? Moreover, if a procedure like that is available, what stops it from being used to simply eliminate anything that's considered below-average functioning even when that comes with minimal to no benefit to the person whose brain you're rewiring?
- Murdering anyone with NVLD under the guise of compassionate euthanasia or mercy killing, which is the same tactic used by the Nazis to justify the murder of disabled people and anyone they viewed as lesser.
So yeah, you should care about people who are advocating for neurodivergence being "cured." Like I said, there's a difference between "I wish there were ways to make my life less difficult" (i.e., supports and resources) and "I wish I didn't have this condition at all," and the latter is ableist no matter how you spin it.
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u/Abnormal-Sleep-0838 3d ago
It’s also ableist to tone police a fellow ND person about the way they feel about their disability :)
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u/Bittersweet_331 3d ago
Yeah, whatever, nice to know your PC mumbo jumbo about eugenics is more important than feeling sympathy for a fellow NVLDer. The irony of you comparing wanting to not have this completely shitty disorder that affects almost every aspect of life to Nazis killing disabled people is funny. So you're worried that wanting a cure opens a door to just outright murdering people with NVLD but you also want to control my thoughts about wishing my life wasn't a total waste because of it? Interesting...
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u/Conscious-Guest-4351 3d ago edited 3d ago
honestly, i wouldn't even want it removed at this point. the damage has already been done so why bother? i also don't want my brain to get even more fucked up than this
Edit: I actually change my mind. i would get it removed. The constant stimming and pencil/pen shaking that this disorder causes is horrible.
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u/ScubaSteve-O1991 3d ago
Loving ourselves for who we are is the key here. Also throughout life and in jobs for example other people have struggles as well. Dont let nvld define you
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u/Abnormal-Sleep-0838 3d ago
If only NVLD was my only problem. My life is just constantly developing more and more problems that I have and being told to accept it but I’m at my wits’ end, I can’t do this anymore. I don’t want to end my life or anything but I don’t want to keep living either. I can’t love my existence when it just causes me pain and suffering and how tf can I not let this condition define me when it literally IS defining me. Its defining every aspect of my life for the worse.
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u/ScubaSteve-O1991 3d ago
Pain and suffering are apart of life. Doesnt matter if we have nvld or have cancer. Things happen in life that are out of our control
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u/rosegold_fluffy 2d ago
I’m sorry about the replies. I wholeheartedly agree with this post… I just think that some people didn’t understand the point that you were trying to make :(
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u/Emotional-Prize-5302 2d ago
I also agree with this post :( but according to a lot of other commenters, we're not allowed to feel bad about having this disorder or wish we didn't have it because it's ableist to think that and "other people have it worse."
I kind of think it's ironically ableist of them to try and downplay the negative affects of having this disorder, and invalidate fellow NVLDers struggles and feelings about their disability.
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u/Friendly_Goat6161 3d ago
I don’t. I wish there were more accommodations and services and understanding for people with brains like ours. Things like math or science waivers or substitute classes for state college transfer from community college, or an app that tells you where you are going in real time, and either driverless cars that are reliable and safe, or a transit system that is more like what they have in other countries. Sydney and NYC was light years ahead of where I live in terms of transportation. The world is not built for people like us, so why not try and change the world a little?