Living with Cone-Rod Dystrophy: I Don’t See Obstacles

Hi, Kristine! We’re glad you’re here. You’re studying medicine, massage, and psychology. How did that path come together?

After 9th grade, my mom—who’s a nurse—sent me to medical college. I didn’t enjoy it at first. But when I began volunteering at a hospital. I worked in the operating room and wound care—and that’s when I fell in love with medicine. At the same time, I completed a massage therapy course and started working in a studio. I wanted to help with both physical and emotional trauma, so I enrolled in a clinical psychology program.

When and how did you learn about your cone-rod dystrophy?

I was seven. It started when the school placed me in the back row, and I couldn’t see the board. Doctors couldn’t diagnose me for a long time—at one point, they suspected a brain tumor. Finally, in Kharkiv, at an eye clinic, they ran a CT scan and explained my condition, how to manage it, and what lifestyle changes I’d need.

I don’t know how my family reacted—I was too young to notice. My dad and I never talked about it. I think it’s still hard for him to accept.

Was there a time you didn’t want to tell people about your diagnosis? Did you go through denial or anger?

I didn’t have a clear “denial stage”—I was too young to understand fully. I just remember the doctor giving dietary advice.

Things changed during my teenage years. I didn’t want to talk about my diagnosis, and I still don’t. It’s a form of self-protection. People can be tactless. If you behave a little differently, they assume you’re drunk or high. They won’t offer help—they’ll just scoff. I still deal with that almost daily.

The worst were the questions like “Where are you looking?” It made me furious. But eventually, I matured, and so did my social circle. Those comments stopped.

What would you tell your younger self in that moment?

I’d say: “Let it go.” People can be ignorant. Not everyone will understand you, and that’s okay.

What are your biggest day-to-day challenges?

Getting around the city. Public transport, navigating new places—it’s all hard. If I can’t get dropped off directly by taxi, it’s nearly impossible to find my way. Even drivers don’t always follow directions properly.

What helps you cope?

Willpower. I pull myself together, call people, argue if needed—just push through. The key is not giving up.

Did you face challenges in school or college due to your vision?

School was okay—teachers knew me, and adaptive tools were available, though I rarely used them. I just needed more time for tests because I read slowly.

College was harder. I had to explain that I’m visually impaired. Some people said I shouldn’t be there—that I wasn’t “fit” for the profession. It was painful. They tried to move me to an adaptive program that focused only on massage. But I kept up with the regular program and graduated with honors.

How do your professors and classmates treat you now?

Much better. The psychology faculty is supportive—teachers offer accommodations themselves. I’m open about my vision—it helps prevent awkward moments. Early on, I had to assert myself so people wouldn’t take advantage. Now I get treated with respect. Some even say, “If you hadn’t told us, we wouldn’t have known.”

Which tasks are easiest, and which are hardest for you?

Verbal assignments are easier. Digital tests, presentations, and stats labs are much harder. The online testing systems can’t be adapted, and without passing them, you can’t take exams. They’re frustrating and often meaningless educationally. 

Why did you choose clinical psychology?

Honestly, I just wanted to learn. I didn’t know much about psychology when I enrolled. I’m familiar with psychosomatics and NLP, but I don’t plan to use body-oriented methods. That’s not my thing.

What do you enjoy most about it?

Finding root causes and connecting the dots, understanding why things happen. It’s like solving a mystery.

How do you navigate during massage work?

I can see enough to orient myself. Only unfamiliar places are tricky. But when I know the route, I could walk it with my eyes closed.

Is there anything you sense more strongly than sighted colleagues?

Yes—hearing and touch. Definitely.

What misconceptions have you heard from others?

Things like “Where are you looking?”, “Why don’t you trip?”, or “Why are you wearing clean clothes?” — as if vision loss means you can’t dress yourself.

What do you wish people understood about living with vision impairment?

Glasses aren’t magic. Just like wheelchair users need ramps, we need accessible environments: big price tags, screen readers, and visual markers on steps. It matters.

Who supports you?

My mom, sister, and friends. No one treats me like a disabled person, and I appreciate that. I prefer to do things myself. If I fall, fine—I’ll remember not to trip next time.

What tools or resources help you most?

Zoom functions on my phone, the camera for reading price tags, my digital magnifier, sound-signaled traffic lights, and color-marked stairs. All of it helps.

What do you envision for yourself in 5–10 years?

I want to buy a home and start a family. Be cozy, settled, with a child.

How has your diagnosis affected friendships or romantic relationships?

It helps weed people out. If they can’t accept it, they go. I used to have low self-esteem, but now I’m with someone who loves and accepts me.

What qualities in people matter most to you now?

Intelligence. I like people who are articulate, thoughtful, and have something to share.

What gives you willpower?

Wanting to live like everyone else.

Do you ever feel like you’re exactly where you’re supposed to be?

Yes—especially when studying. I feel like I’m doing what I’m meant to do.

Is there a metaphor that describes your path?

“I don’t see obstacles.”

What would you say to other girls with similar diagnoses just starting their journey?

Life isn’t a demo version. We get one shot. Don’t wait. Take every chance you have, right now—because this moment won’t come again.

Is there anything I didn’t ask that you’d like to share?

People with vision loss can live active lives. I dance. At medical school, they didn’t let me practice giving injections. But at a hospital, a guy said, “Come on, I’ll teach you by touch.” And I learned. You can do anything—if you want to, and if someone’s willing to teach you.