Insights into the challenges of NVLD

This Rare Disease Month, we're spotlighting conditions often overlooked or misunderstood by the broader healthcare and social systems. Among these, Nonverbal Learning Disability (NVLD) stands out—a condition that shares traits with Autism, ADHD, and Dyspraxia but presents its unique set of challenges.

We've spoken with Alike advocate Ash G, to gain insights into living with and navigating the challenges of NVLD. Ash's perspective is invaluable in shedding light on the everyday realities of those affected and in fostering a supportive community for all individuals with rare diseases.

Can you share a little about your condition and how it affects your daily life?

NVLD, or Nonverbal Learning Disability, is a neurodevelopmental disability kind of like Autism, ADHD, and Dyspraxia. When I have to mask for too long, I end up having shutdowns and meltdowns. I find it really hard navigating situations where people can't get how I show empathy, both in person and online. I constantly feel like I’m walking on eggshells, worried everyone will eventually hate me.

What is the most common misconception people have about your condition?

The biggest misconception about my disability is that people think it's not real. They see it as me not trying hard enough, like it's a personal failure. There’s also this thing where people tell me I don't look like I have a disability. My walking is odd because I struggle with fine and gross motor skills, and simple things like tying shoelaces or riding a bike are challenging for me.

Can you share the story of how you were first diagnosed with your rare disease?

I got my first diagnosis as having a general learning disability when I was in primary school, around 7. After my brothers were diagnosed with autism, it kinda put things into perspective, but it still wasn’t the right diagnosis for me. School became too much, too stressful. By grade 10, after losing my grandma, things got worse, and by grade 12, after a reevaluation, they added ADHD and NVLD to my diagnoses.

What are some challenges you've faced because of your condition, and how have you overcome them?

A huge challenge is how people misunderstand my way of showing empathy, especially online, but also face-to-face. I don’t really feel sympathy the way others do; I feel empathy and try to share my perspective to help others feel less alone. But often, it’s taken as me belittling their problems, which is the last thing I want. Dealing with rejection sensitivity is tough, too. Like, waking up to find out I’ve been blocked or banned overnight really hits me hard, making me feel like the problem. I’m still working through these issues, with therapy playing a big part in my coping strategy.

What kind of support has been most helpful for you?

Getting help for my disordered eating has been a game-changer because it ties into how my disability impacts my mental and physical health. The self-love club at the Youth Wellness Hub has been a great support network for me, providing a space to address my eating issues alongside others facing mental health challenges.

How do you approach explaining your condition to others who may not be familiar with it?

I usually start by comparing NVLD to better-known disorders like autism, ADHD, and dyspraxia. Sometimes, I mention celebrities with similar challenges to give people a reference point, even though I only know a few.

What's one thing you wish more people understood about living with a rare condition?

I wish more people knew it existed. Most times, I feel awkward using NVLD as my diagnosis in public because of the disbelief that follows, especially since I can communicate well most of the time.

What advice would you give to someone else who has just been diagnosed with a similar condition?

The best advice I can offer is to take time to understand how you feel when you’re not masking. Recognize when you need to rest because NVLD comes with extra fatigue. Celebrating small victories is crucial. And remember, it’s not about making your family proud under societal norms; it’s about understanding and accommodating your own needs.