Hello, I’m Alexander, 36 years old, and I’ve known I have NVLD since I was 20. For years I wanted to pay as little attention as possible to this disorder that complicates my life, but now I feel the need to talk about it and possibly also create some awareness around it. My NVLD has long defined my life, something I have only recently realized. Now I want to take my life into my own hands again.
L͟o͟o͟k͟ t͟o͟ u͟n͟d͟e͟r͟s͟t͟a͟n͟d͟
People with NVLD can experience difficulties in a wide variety of activities. For me, it mainly manifests itself in terms of (not) understanding non-verbal instructions. A recent example to illustrate this: I recently went to a beginner’s salsa class and got a teacher who performed the dance steps without naming the steps. I saw him take steps but couldn’t imitate him. It would have been more helpful if he had said: “First two steps forward, then two steps to the right”, but he didn’t and I had to interpret his fast movements myself, which was difficult for me to do. When my brain finally deciphered the movements of the dance teacher, he and the other students were already working on the next dance steps. This is a classic example of my NVLD. I have to hear instructions to understand them, just seeing the instructions is not enough. I sometimes call this phenomenon ‘looking with understanding’. Just like some people have trouble with reading comprehension, I have trouble with looking comprehension. I see what is happening, but it needs to be named and repeated before I understand it.
My childhood memories are laced with NVLD-related niggles. As a toddler, I did not manage to make a beautiful statue with clay. The teacher had shown how to do it, but she had not said how to do it. I was missing essential information for me to get started with the clay. The same thing happened when we learned to sew and crochet at school. I didn’t understand what to do and made a mess. The sewing didn’t work and the teacher got angry and pulled hard on my ear. At that age, I was seven years old, of course, I didn’t know anything about NVLD, but I understood that I was different from my classmates and that I had angered my teacher by not doing what she asked. I suffered from performance anxiety and I still have that to this day.
As I got older I became more and more aware that I could do more things less well than my peers. I looked for ways to deal with that and tried to make myself invisible if something had to happen that I had to be ‘handy’ for. For example, I systematically tried to avoid making mistakes and thus failing, but by always avoiding possible problem situations, I naturally learned nothing. “You can learn from your mistakes” was not immediately spent on me.
When I was 20 I wanted to study journalism (because, like many people with NVLD, I like to work with language), but I was afraid to start that study because I would also have to learn to work with certain computer programs ( Indesign, Photoshop) and I was sure I wouldn’t succeed. At the same time, I was in contact with an educationalist with whom I had also taken an IQ test a few years earlier and she then told me, when I was 20, that she had diagnosed NVLD with me a few years earlier but that she did not tell me. because she didn’t think I was ready to hear that news at the time (and I think she must have been right about that). My journalism studies were not always easy, but I had a teacher to whom I could go with my problems, and the requirements for Photoshop and Indesign were adjusted somewhat downwards for me.
i͟ c͟a͟n͟’t͟ d͟o͟ i͟t͟, I͟ w͟o͟n͟’t͟ d͟o͟ i͟t͟
Still, I wasn’t feeling well at all. Knowing I had NVLD at age 20 explained much of what had happened to me as a child and why I had often felt different, but it also made my difference official and final. I felt the need to tell people I had NVLD (and even apologize for it). But no one around me had ever heard of NVLD and it only made me feel even more of an outsider. I tried to avoid situations where NVLD could play tricks on me as much as possible and my focus shifted even more to my fears. I was afraid to try new things, meet people, and participate in activities because I assumed I wouldn’t succeed anyway. And I went one step further: I discovered that I could also decide not to want the things I thought I couldn’t do anymore. That made my situation clearer to me in a way, but it was a very cynical approach to my problem. For example, it was much easier to tell (lie) to myself that I don’t want a relationship.
Then I’d say I couldn’t be in a relationship because no girl would like me enough. If I told myself I didn’t want a relationship at all, at least I was in control of my situation and no longer a victim of my NLD and subsequent fear of failure. And so wanting nothing became a pattern: I (so to speak) didn’t want a relationship (so I could avoid being rejected), I (so to speak) never wanted to travel (so I could avoid overstimulation), I (so to say) didn’t want children, I (supposedly) wanted almost nothing anymore, I (supposedly) had almost no need anymore. All I wanted to do was listen to music, read, write, and have coffee with friends, all things that made me feel very safe, and in control, and where my NVLD certainly wouldn’t interfere with me. And I also had a lot of time for all these things because finding a job after my studies turned out to be a difficult job. Not surprising, of course, because my fear of failure and inferiority complex probably gave employers a lousy impression.
C͟a͟u͟g͟h͟t͟ b͟y͟ m͟y͟s͟e͟l͟f͟
And that’s how I lived for years, with ups and downs, believing that I didn’t want a lot of things, that I was a minimalist who didn’t need much to be satisfied. That this mindset was originally caused by NVLD, I was strangely not even aware of that over the years, so I had settled into it. But of course, I wasn’t particularly happy all those years, I could admit that to myself. I wasn’t really unhappy either, but my life was just very monotonous and predictable, nothing special ever happened. I did the same things over and over with the same people over and over and rarely tried anything new, rarely got out of my little comfort zone. And all this in order not to have to be confronted with any fear of failure and NVLD. I was the prisoner of my thoughts.
I͟t͟ n͟e͟e͟d͟s͟ t͟o͟ c͟h͟a͟n͟g͟e͟
I finally became very aware of the sadness of this anxious life when I got into a relationship last year. I had completely put the thought of ever having a girlfriend out of my mind when I met someone last year. My girlfriend wanted to do all kinds of things with me and she was full of ideas, but when she asked me what I like to do, and what I feel like doing, I didn’t know what to answer. I found that I had completely forgotten to know what I want. I know damn well what I don’t want, yes, but what I do want, no idea. It was then that I started to realize that I urgently needed to do something about my mindset and rediscover what I want and who I am. Slowly since then, I’ve been trying to break down the wall I’ve built around myself for fear of facing my NVLD and I now increasingly dare to step out of my comfort zone. I feel ready to face my fear of failure and put it into perspective and do things that I know I will probably have trouble doing because of my NVLD. That confrontation is necessary in the first place to improve the quality of my life. I’ll be traveling again this summer for the first time in 12 years – the thought does stress me out, but I still know it’s going to be a good experience – and I’ll just say ‘yes’ to proposals a lot more often, where I used to say ‘no’ almost automatically, pushing people away from me. I already gave the example of the salsa for beginners course. That experience may not have been a hit, but going to that class was very special for me in itself. A year ago I wouldn’t have even thought about it, but now I was ready. The fear of failure or being out of tune is still very present, but it no longer paralyzes me.
Long story short: avoid what happened to me and don’t let your fear and shame take over. You can avoid your demons and always choose the safety of your comfort, but then you will likely have a limited quality of life. Trying something out’s always better than sitting at home and moping. If you don’t dare, don’t win, goes the saying.
My best friend recently told me with a laugh that she is jealous of me because at 36 I still have so much to discover in this life. There are still so many hobbies I haven’t tried, so many parties I haven’t been to, so many people I haven’t met and so many trips I haven’t taken. That is indeed true and I want to start enjoying life more, but of course, I will do that at my own pace. Above all, I want to take the time to investigate what I like to do and shift the focus from what I don’t want to what I do want.
NVLD and the resulting fears dominated my life for years, but it’s never too late to take back control of your life and make the most of it.
I intend to do that now and wish you the same.
Hi, I’m Alex, from Belgium, and after mental struggles because of NVLD I want to tell my story and raise awareness.
I started a YouTube channel ‘My NVLD Story’, where I also share my experiences. https://youtube.com/@MyNVLDSto
This text was previously published on hetnldplan.nl, a dutch site on NVLD.