For People With DME, Online Connections Provide a Sense of Community

Virtual support can be a helpful way to meet and connect with other people who have DME and share similar experiences.

Diabetic macular edema (DME) is a diabetes-related eye complication that can lead to vision loss. While it’s not a rare condition, it’s still relatively uncommon — and not everyone knows about it.

Because DME can gradually cause a loss of eyesight and make it harder to get around, people living with the condition are more likely to withdraw socially and isolate themselves. But staying connected to others is important for everyone, including people with impaired vision.

It can be difficult, though, to connect with others who “get” it — especially in person — when you don’t know anyone else who has DME. That’s where the value of online community comes into play.

What Experts Say: The Benefits of Connection When You Don’t Have a Common Condition

“People with vision loss often experience a sense of losing their independence, of losing control,” says Jocelyn Tapia, a clinical social worker with the Lighthouse Guild in New York City. But connecting with like-minded people can help you:

• Learn more information about your condition.
• Feel less lonely by connecting with others who understand what you’re going through. 
• Discover coping strategies that have worked for others.
• Empower you to take control and live your life the way you want to.

“It’s so important for [someone with DME] to sit next to or hear that another person is going through the same thing,” she adds.

Depending on where you live, there may not be any in-person support groups specifically for people with DME. Even if there is a support group nearby, you may not have a reliable mode of transportation or feel comfortable navigating on your own in public to get there and back. Or you may simply not feel up to attending a group. 

“It’s so important for [someone with DME] to sit next to or hear that another person is going through the same thing.” — Jocelyn Tapia, LMFTFacebookTwitter

These feelings are valid, says Adrienne Wexler, a clinical social worker with the Lighthouse Guild. “Grieve the loss, understand that it’s alright to feel pain, to feel anxiety, to feel depressed,” she says. But connecting with the community can help remind you that people still care about you and you still have a lot to contribute to society, she adds.

And if you don’t have access to an in-person DME support group, “The internet is a great resource,” says Vaidehi Dedania, MD, an associate professor in the department of ophthalmology and the program director of the retina fellowship at New York University Grossman School of Medicine in New York City.

Wexler, who runs three tele-support groups for the Lighthouse Guild, understands the power of establishing a virtual DME community. “I’ve had clients share their telephone numbers with each other,” she says. This is invaluable, because, “If they’re not leaving the house, they can pick up the phone, and they have a friend on the other end of the line who is listening, who is supporting, who is understanding, who is not judging.”

In some cases, these connections can even push you out of your comfort zone by suggesting other ways to look at your situation — through the lens of someone who’s been there before. “And because it comes from a member who is also visually impaired, people are often open to it,” says Wexler.

Sarah’s Story: Creating Her Own Online DME Community

Before her DME diagnosis in 2017, Sarah Castaneda only knew one other person with the eye condition — her cousin Isabel. Even now, the only other people with DME she’s met have been through her doctor’s office.

So, in February 2023, in an effort to expand her DME connections, Castaneda started a Facebook support group. “I just felt like there are a lot of people who are lost, not knowing where to look [for support],” she says. Her Diabetic Macular Edema Support Group now has over 150 members across the globe, from the United States and Canada to Mexico and Egypt. “Everyone is interacting with each other, falling on each other for support, asking questions, and following through with treatment that they didn’t even think they were going to go through until they got support from our page,” she adds.

But when you have vision loss, spending time online poses its own challenges. “Reading is a task for me, period,” says Castaneda. “I have to focus on every letter, depending on the font, in order to see,” she says. One way she makes connecting with others online a little easier is by posting videos to TikTok about her real-life experiences with DME. “I just want people to know they’re not the only ones going through it,” she says. “This is my journey, this is what I’m going through. And if you’re going through it, maybe my journey and me speaking about it will help guide you through yours.”

“I just want people to know they’re not the only ones going through it.” — Sarah Castaneda, diagnosed with DME in 2017

Castaneda believes information about DME should be free and hopes that people find support in what she posts online. “That’s what the world needs,” Castaneda adds, “is for everybody to help one another out.”

How to Build Your Online DME Community

Are you ready to find DME support but not sure where to start? Dr. Dedania suggests asking your doctor to recommend trusted online resources for information about DME and to find support.

There are also plenty of ways to connect with others virtually through reputable diabetes and low-vision organizations.

You can even browse social media for low-vision support groups, such as Castaneda’s Facebook group. Or search on Instagram and TikTok for hashtags like #diabeticmacularedema or #visionloss to find relatable posts and connect with like-minded people.