Here’s What it’s Like to Lose Your Vision from Diabetes — at Age 22

Talking about it helped Katlynn Goodsell work through her feelings.

At first, it looked like a tiny bug in her eye; a little black speck in her vision that moved whenever she tried to look right at it.

The spot went away after a day. But then it came back, again and again.

Katlynn Goodsell had an idea of what it might be. A Google search had suggested it was a floater — a black or grey speck that moves around in your vision. They’re more common among older adults.

She hoped she was wrong.

“In my head, this was something that could happen when I was 50 or 60 somewhere down the line,” she said. “Not when I was 22.”

For Goodsell, the condition was diabetes-related. She’s been living with Type 1 diabetes since she was 11 years old — a hereditary, chronic disease that happens when your pancreas isn’t making enough insulin.

Katlynn Goodsell sits on a couch. Rewire PBS Living DiabetesCredit: Katlynn Goodsell
Goodsell still isn’t sure what vision she’ll be able to get back.

Your body uses blood sugar for energy, and insulin is the hormone that helps it get there. Without insulin, blood sugar just builds up in the bloodstream.

People with this type of diabetes have to check their insulin levels frequently. They have to give themselves insulin, either by syringe, pen or pump.

But health complications can happen regardless.

Her eye condition turned out to be a symptom of diabetic retinopathy, a complication of diabetes in which the blood vessels on the back of your eyes are damaged.

Finally, a diagnosis

As scary as losing your vision can be, going into the doctor was one of the hardest parts for Goodsell. It was like admitting something was wrong.

Right before she started having vision problems, Goodsell had just moved 2,000 miles away from her hometown. She had just started a new job. Immediately, she was flooded with a bunch of scary thoughts.

“I was like, ‘What if they take my license away? What if I have to have surgery?’” she said. “I came up with all these obstacles in my head.”

But her vision continued to get worse. By the time she went to the doctor six months later, she had almost no vision in her right eye, and limited vision in her left.

The diabetic retinopathy diagnosis helped put a name to what she was experiencing. But her doctor wasn’t able to give her a specific prognosis. Goodsell wasn’t — and still isn’t — sure what vision she’ll be able to get back.

One surgery, three years and many doctor’s appointments later, she has regained some vision. But she’s also legally blind, and had to relearn how to be independent.

“I’ve had to learn how to work things like an oven,” she said. And “I’d get put in a group text and (have to) ask someone, ‘What does that say?’”

Honesty is hard

Explaining her condition to friends has also been challenging. She can’t just get Lasik treatment or put on a pair of glasses. Most of her friends don’t know anyone else who is experiencing vision loss.

Growing up, not a lot of people understood her diabetes diagnosis, either. Type 2 diabetes is much more common.

“They say, well you’re not overweight, or you’re young, or you can’t be eating sugar,” Goodsell said.

So she often avoided the topic. Her diabetes was difficult to manage, and she saw it as a reflection on herself — even though complications can happen to anyone, and diabetes is hereditary.

So when she began to have vision loss, she had some of the same feelings.

For a while, Goodsell simply didn’t tell anyone. She’d say she had vision issues and couldn’t drive, but wouldn’t explain why. She’d tell people she forgot her contacts.

When she moved back to her home state of Minnesota, it came to a breaking point.

She’d sometimes run into people she knew in public, but because of her vision, not recognize them right away. She wanted folks to know that she wasn’t being rude. She wanted to be honest.

So Goodsell wrote it all down. Then she posted it on her personal blog and shared it to 2,000 Facebook friends.

“I needed to say it out loud in order to continue to move through it,” she said. “Because for a long time it was a huge issue.”

She was surprised by the number of people who reached out to her after the post. Many weren’t struggling with diabetes or vision loss, but other health problems they felt they had to hide from their friends and family.

Goodsell had written it to lift a weight off of her own shoulders. But it had helped other people do that, too.

Big plans

“I think that publishing it was my version of, ‘I’m accepting this,’” she said. “It is what it is right now, I don’t know what the future is, no one does.”

Goodsell is now 25. She’ll be starting vocational rehabilitation soon, which will help her get back into the job market.

She’s hoping to someday become a life coach — something she’s wanted to do since shadowing her dad in the profession as a kid.

Taking a break from full time work during all this has reignited that passion for her.

“Everyone’s going through something,” she said. “And that’s something we all need to realize.”

Gretchen Brown

Gretchen has reported on the criminal justice system in rural Minnesota and covered everything from politics to millennial truck drivers for Wisconsin Public Radio. She is passionate about public media as a public service. She’s also into music and really good coffee. Follow her on Twitter @gretch_brown.