It can be difficult to recognize DME symptoms, because they can come on gradually. You may think you need new glasses, or it might not seem like a big deal — at first. “Patients become symptomatic, because they notice their central vision becomes blurry,” says Diana Do, MD, a professor of ophthalmology and the vice chair of clinical affairs at Byers Eye Institute at Stanford University in Palo Alto, California. This affects a person’s ability to read, see clearly to drive, and do daily activities in general. “Often, when a patient has diabetic macular edema, their symptoms cannot be corrected with prescription eyeglasses, because the damage is occurring in the retina,” she adds.

“DME affects quality of life in so many different ways, both in the house and outside,” says Michael Abramoff, MD, a retina specialist and professor of ophthalmology and visual sciences at the University of Iowa in Iowa City. “It can lead to loss of perception, loss of color, and loss of enjoyment of what you previously were able to do.”

These central-vision challenges can transform different areas of life, including:

• Work With DME, anything from reading to recognizing faces can become more difficult while you’re on the job. “A patient who is symptomatic may have difficulty seeing the computer screen or reading documents, and this can certainly affect their work performance,” says Dr. Do.
• Hobbies and Exercise You need to be able to see well to move around and stay active. “A patient with decreased vision due to diabetic macular edema might not be able to see clearly in order to safely ride a bicycle, play tennis, or do other hobbies,” says Do.
• Social Life and Relationships Living with DME can affect your emotional well-being, mental health, routines, and social relationships. One study found that people who felt vision problems were interfering with daily life and had higher anxiety were more likely to be depressed, no matter how severe the eye condition actually was.

  [2]

   This can lead to increased isolation, as well as more strained relationships, especially when you’re not able to get around as easily as before. “Patients with vision loss can lose their independence, because they can’t see well enough to navigate in the world, and that can lead to less interactions with their friends and families,” says Do.
• Finances Being unable to perform your job like you used to can also affect your income, especially if you lose your job or work fewer hours. That’s one of many reasons DME treatment is so important. One study found that treating DME provided economic value both for people with the condition and for their community, because it improved all sorts of outcomes, including employment.

  [3]

On top of all of these issues, people with DME often need to manage other diabetes-related complications, too. “Diabetic macular edema doesn’t exist in a vacuum. It’s likely that diabetes is also affecting other parts of a person’s systemic health,” says Do. For example, many of Do’s patients who have DME also have kidney problems. All together, these issues can make it more difficult to stay connected to the outside world.

Because it can be so hard to navigate life inside and outside your home, it’s crucial that you maintain your relationships with others, especially your caregiver. A caregiver can be a life partner or spouse, adult child, sibling, or trusted friend. They can help with everyday tasks and medical ones. The relationship between you and your caregiver is very important, so there are a few things to keep in mind to make sure you’re both on the same page.

• Stay on top of all medical appointments. Both you and your caregiver truly need to understand DME and how extensive treatment may be, which could include once-a-month visits to a retina specialist. After all, your caregiver is probably going to be helping you get to your appointments, says Do. “We know that these treatments are effective in improving a patient’s vision, and adherence to the treatment schedule is essential to restoring the eyesight,” she says.
• Talk to your caregiver about modifying your home. Be honest with your caregiver, so they are fully aware of the extent of your vision changes and how they can help you get around better at home. “Make sure that they understand this disability is very concerning,” says Dr. Abramoff. Tell them what you need specifically, such as better lighting. You might have them help rearrange your kitchen to put the cookware and dishes you use most often in easy-to-reach places. Or ask them to get rid of rugs and other tripping hazards.
• Be up front about time commitments. Be open with your caregiver about how often you’ll need transportation and how many appointments you’ll have. “That’s why it’s important to have, perhaps, multiple caregivers available,” says Do. That way, if one can’t take you to a doctor’s visit, maybe another person can step in, she notes. As soon as you schedule an appointment, work out who will be taking you there, with plenty of advance notice.

It can also help to get support from organizations and other people with DME and impaired eyesight. These include:

• American Diabetes Association Check out their community connection for help with medical care, financial assistance, and more.
• National Federation of the Blind This resource has local chapters and mentors throughout the United States.
• Rides in Sight Search this database created to help low-vision and mobility-challenged adults find local transportation providers.
• Lighthouse Guild An organization for people with vision loss, they provide healthcare services, occupational training, and independent living resources.
• VisionAware Here, you’ll find a directory of services searchable by state, as well as helpful products for people with low vision.

In addition, there are resources specifically for caregivers, such as:

• Caregiver Action Network This organization is for all types of caregivers — even those who work a full-time job or don’t live near family — to connect with other caregivers.
• National Volunteer Caregiving Network They are a national network of volunteer caregivers who work with local organizations throughout the United States to help those who need it.

Above all, remember that with treatment, you can still live a full life with DME. “I think it’s important for patients to know that there are effective and safe treatments for diabetic macular edema,” says Do. “In this day and age, with effective treatment, patients do not need to lose vision due to diabetes.”

“Even at later stages, there’s hope,” says Abramoff. “Don’t give up, but don’t ignore it, either.”

• Because DME can rob you of your central vision, you may have difficulty recognizing faces and taking part in hobbies and other activities.
• Challenges can include not being able to perform work duties, experiencing obstacles with getting around to exercise or engage in hobbies, and having anxiety or stress about living with DME.
• Caregivers can help by taking you to medical appointments, helping you make modifications to your home, and more.