Tips and Advice for the Glaucoma Patient

A glaucoma specialist shares her words of advice.

As a glaucoma specialist, I have words of advice that I like to give to every glaucoma patient — words of advice that I’ve gathered over the years and feel that each patient should know to better take control of their disease.

Topics covered:

• Glaucoma Prevalence
• Advice for Patients
• Acceptance
• Follow-up
• Communication

Glaucoma is an eye condition that, if left untreated, will lead to blindness, and that blindness is irreversible. We know that 50% of people who have glaucoma are not aware that they actually have the disease, and we know that people who are aware that they have the disease still struggle with trying to live with glaucoma and take care of it.

Imagine that you lost your vision today. What would you miss most? I want you to take a moment to write it down. Would it be that you would miss your family, seeing their faces, the memories that you remember having with them? Would it be certain sites that you’ve seen, if you’ve traveled around the world and seen certain beautiful scenes? Or maybe it might be your independence, being able to take care of yourself, walk without fear. These are things that could actually go if your glaucoma is left untreated.

If you have been recently diagnosed with glaucoma, or if you are struggling with trying to deal with glaucoma, here are some top pieces of advice from a glaucoma specialist to help you cope with your diagnosis and treatment.

• Accept the disease. When you have been diagnosed from a trusted doctor that you have glaucoma, glaucoma doesn’t go away, and glaucoma won’t go on pause just because you’re not ready to accept it. Staying in denial will not help slow down the disease. If you can accept the disease, now you can take more control and be your own advocate.
• Show up and be present. Don’t miss your regular eye exams. Even if your glaucoma seems to be doing fine and you’re under good care from an eye doctor, glaucoma can change without warning. It can become more aggressive, the drops can stop working for you, or the treatments that you have can stop working, and there might be a need to adjust your treatment. If you don’t show up for your regular eye exams, things can change, and sometimes in an irreversible way, so it’s important to show up.
• Speak out. Be present and ask questions. It’s your eyes and your vision, so you have a right to know what’s going on. It’s okay to ask questions. Ask the doctor, “Is my treatment on target or has anything changed?” The more that you understand what’s happening with your eyes, the more that you can participate in preserving your vision.

It’s also important to speak to your family members. Glaucoma is hereditary, and your family members are also at risk for glaucoma if you have it. If you don’t tell them, you’re doing them a disservice, because the earlier they find out, the easier it is for them to get treatment. Glaucoma risk in families is 4 to 9 times higher. Anyone who is a blood relative is at increased risk. Let your family members know that you have glaucoma, that they may be at risk, and encourage them to have their eyes screened specifically for glaucoma. You might very well be giving them the gift of sight.

Watch the Video

Words of advice in this article are from excerpts from Dr. Constance Okeke’s new book, “The Glaucoma Guidebook: Expert Advice on Maintaining Healthy Vision.” It’s an easy-to-read yet thorough guide to understanding and managing glaucoma and taking action to care for your vision.

Article by Constance Okeke, MD, MSCE.
First posted on November 5, 2019; Updated on December 19, 2022.