Because I Struggled with an Invisible Disability, I Want to Support Those Facing Life's Challenges: Exploring the Message from Non-san, Who Lives with Vocal Cord Atrophy!

Do you have someone with a disability around you?

According to the Cabinet Office, there are approximately 9.64 million people with disabilities in Japan. This figure includes those with physical, intellectual, and mental disabilities, and since some individuals have multiple disabilities, it is not a simple total. This means that 7.6% of the population is living with some form of disability.

Reference: Status of Persons with Disabilities｜Cabinet Office

This also includes invisible disabilities.

We had the opportunity to interview Non, who has vocal cord atrophy.

Non experienced difficulty speaking suddenly one day, but it took a long time to get diagnosed with vocal cord atrophy.

Moreover, because there were no visible changes to her body, she found it difficult to gain understanding from those around her and felt a significant sense of hardship.

We asked Non about the barrier-free society she envisions and the message she wants to convey to others in similar situations.

1. What is Vocal Cord Atrophy?

When producing sound, the vocal cords vibrate while closed to create a voice.

Vocal cord atrophy is a condition where, due to aging or other factors, the muscles become thin, resulting in the vocal cords not closing properly during speech, creating gaps.

It is said to occur frequently in older adults, but Non mentions that it can also develop from not speaking.

Although the cause is still unclear, Non believes that the significant reduction in family conversations following her parents' divorce during her childhood may have weakened her vocal cord muscles, leading to vocal cord atrophy.

This results in symptoms such as a hoarse or shaky voice, and additionally, Non experiences difficulty finding words.

Compared to physical disabilities, it is challenging to judge by appearance, so what kind of consideration should we offer?

[Interviewer (Writer): Akaishi / Interviewee: Non]

Akaishi: What kind of consideration would make you happy, Non?

Non: I think people sometimes judge by appearance without any ill intent.

Because vocal cord atrophy is not visible, when I can't speak when I try to, people sometimes form negative impressions that don't align with my intentions. It's very frustrating.

So, I would appreciate it if people could have a little more empathy. Instead of making a judgment in that moment and keeping it to themselves, if they could express their feelings directly, I could explain the situation, which would make me happy.

2. Who is Non?

Non reflects on her childhood, describing herself as an active and justice-driven child.

She became passionate about badminton in middle school and wanted to improve in high school. However, one day, Non experienced a change in her body.

She suddenly felt chest pain and had difficulty speaking, so she decided to skip voice practice in club activities that day. The same happened the next day and the day after that.

A few days later, she realized something.

"Oh, how do I produce my voice again?"

She could no longer project her voice as she used to. Even after visiting the hospital, the cause remained unknown, and she gradually became afraid of speaking.

Thus began Non's daily struggle with an invisible disability.

2-1. Challenges Faced Due to an Invisible Disability

Akaishi: What difficulties did you face because you couldn't speak?

Non: Honestly, it's been nothing but difficulties.

Having trouble speaking made me realize the importance of voice. Throughout school life and job hunting, I painfully realized that communication heavily relies on voice impressions.

Especially during job hunting, interviews are crucial, and for someone like me who struggles to speak, it was very anxiety-inducing.

Even during internships, despite my desire to grow, my voice often got drowned out in group discussions, leading to a constant feeling of self-denial.

Akaishi: Did you inform your employer about your difficulty speaking after getting a job?

Non: I couldn't.

I was only recently diagnosed with vocal cord atrophy, so at the time, I didn't know how to explain it and convinced myself it was due to nerves.

As a new employee, I had many phone duties, which were a significant burden for me.

Even though I knew in my head that I had to say, "Hello, this is ○○ Company," I couldn't articulate the company name, and I would freeze every time.

My boss at the time was concerned, but I couldn't explain it well, and I feared I might get fired if I mentioned my voice issues, so I tried to handle it alone.

2-2. A Turning Point in a Life Where Disability Concerns Couldn't Be Shared

Akaishi: I heard you also developed adjustment disorder at one point. Could you tell us about the circumstances if you're comfortable?

Non: The adjustment disorder wasn't solely due to vocal cord atrophy.

I changed jobs to consider my career, but the working environment was extremely harsh, both mentally and physically. It was during this time that I was diagnosed with a condition called chocolate cysts.

This is a condition where blood accumulates in the ovaries, and if it worsens, it poses a risk of infertility.

I was shocked by the possibility of not being able to have children in the future, and combined with the struggles I had faced, I became very depressed.

Subsequently, I was diagnosed with adjustment disorder at a mental health clinic.

Akaishi: What helped you start living positively again?

Non: When I developed adjustment disorder, I realized I needed to change. While searching for a way to do so, I came across an inspiring blog, which was a significant turning point.

There was an article about self-esteem. Because of vocal cord atrophy, I had been constantly self-denying, but encountering the concept of self-esteem made me realize it was okay to be myself.

By leveling my negative self-esteem, I was finally able to calmly reflect on my life. Instead of continuing to work as I was, I decided to take a leave of absence to focus on my mental and physical well-being and start a new life.

By connecting with many people through social media and seminars, I began to see what I wanted to do and started living a more comfortable life.

2-3. Wanting to Support Those Struggling with Life

Akaishi: What inspired you to want to support people who feel life is difficult?

Non: My own experiences are the main reason I want to help others who feel the same way.

Meeting Tatsuya Miyo, a wheelchair traveler, was also a turning point. I was introduced to Miyo by an acquaintance, and I was amazed by his aura.

It was my first time speaking with someone who uses a wheelchair, and I didn't feel any negative impression about disabilities. It shattered my preconceived notions about disabilities.

Since then, I've wanted to engage in activities that spread these feelings more widely in society.

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Akaishi: What kind of support do you provide?

Non: Currently, my main focus is on sharing information through social media. I share information about vocal cord atrophy and convey experiences and information to those with invisible disabilities.

I also offer consulting to people with similar concerns.

Many people seek advice on how to cure their current symptoms, but having found comfort in facing my own heart, I focus not on curing but on helping them understand self-esteem and consider a lifestyle that feels comfortable for them.

Akaishi: What does comfort mean to you, Non?

Non: It's a state where there's no haze or difficulty in life.

Life is only once, so I believe it's best to spend every moment with a smile and joy.

Having spent a long time denying myself, my ideal is to level my self-esteem and live comfortably and authentically.

3. Words Non with Vocal Cord Atrophy Wants to Convey