Teen Ashley Starobynski Doesn’t Want Her Illness To Define Her

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Diamonds are made under pressure. As such, it’s usually during life’s challenges that one finds out what one is truly made of. Our interviewee’s story today is one of adversity and ultimately, grit and positivity.

Meet Ashley Starobynski

Hi! My name is Ashley and I am 19 years old. I attend the International School of Beijing (ISB) and will graduate with the class of 2023. I am from the United States but have lived in Beijing for five years. I love sports (especially volleyball) and want to major in nursing when I go to university.

In 2019 I was diagnosed with an autoimmune disorder called Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), a rare disease of the peripheral nerves characterized by gradually increasing sensory loss and weakness associated with loss of reflexes.

My second attack of CIDP caused me to withdraw from school during my junior year and repeat the grade. I was home for months while I recovered with nothing to do, so I learned how to do manicures!

I first started out practicing on myself and my younger sister. Then I started doing acrylics for my mom. After two years, I became very good at nails and created a press-on nail business. This was very successful, and I was selling nails left and right, but then I had a relapse in 2022 for the third time. I stopped my business and focused on my recovery, and now I have a beauty business where I sell lipgloss, chapsticks, cuticle oil, and give gel manicures.

We’re so sorry to hear about your difficulties. What helps comfort you in bad times?

As the second oldest sibling, I try to stay positive and think that at least it's not happening to one of my younger siblings or even my older brother. I have three siblings – my oldest brother is 23 years old, my younger sister is 17 and my little brother is 8.

I have a very close relationship with my little brother despite our rather large age gap. His sweet soul and silliness keep me laughing and smiling even during the hard times. One time, he “broke me out” of the hospital to get some fresh air after being inside for over ten days.

During my most recent relapse, it was the hardest for me to get back up. I had just played my heart out at a volleyball tournament with my teammates of four years. We fought so hard and ended up in first place! Then days later, I was in a wheelchair and in the hospital for six days. I ended up spending three months recovering at home.

To get me going this during that relapse, I kept up with my team and always checked how their games were going. I even showed up to the final game of the season just to support them!

What’s one thing you would like people to understand about your condition?

People should learn that those who have an autoimmune disorder or any type of disability are not less than them. We are very capable of doing anything and everything we pour our hearts into. We are not our illness. A lot of the times I’m referred to as “the girl who got sick and was in a wheelchair.” But before I was diagnosed with this illness, I was an amazing volleyball player who beat the odds despite her height, a caring friend, and that quiet but known presence in class. I’m not sure why now I get defined by this illness that I cannot control.

We are regular people, just that sometimes, our immune systems don’t like us very much. But I don’t want to be treated like a helpless victim as if, like, I could become sick at any moment, or as if there are things I can’t do. I am just like everyone else and I come back from my illness each time stronger than before.

Another thing that happens when people learn I have an autoimmune disorder is that they whisper things like “Oh, so you’re sick” or something along those lines. But it’s not something that needs to be whispered about. It is something we live with every day and it has become a part of our lives. We may be upset that we have it, but we aren’t embarrassed by it.

So … about your manicures, how would you describe your nail style?

I just love classy-looking nails. I wish I could do all those crazy hand-painted designs but my hands shake too much from my medications to make them look good. So I mainly keep to simple, clean designs, and if my clients want something very specific I will order decal stickers to match what they want.

To contact Ashley to get your nails done, scan the QR code below to add her on WeChat.

Images: Ashley Starobynski

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