Ask the Advocates: Mental Health and Macular Degeneration

The mental and emotional impact of a macular degeneration diagnosis is often overlooked, from the shock and fear of initial diagnosis to the feelings of grief and isolation that often accompany the progression of vision loss. According to the American Macular Degeneration Foundation, people with AMD are 7 times more likely to experience depression than those without vision loss.¹

If you struggle with your mental and emotional health because of macular degeneration, you're not alone. In this article, our Community Health Leaders offer support, guidance, and hope for a brighter future, even in the face of vision loss.

Q: Has living with macular degeneration had an impact on your mental health? If so, how did you cope with this impact?

Linda

Having macular degeneration has definitely had an impact on my mental health. The thought of losing my central vision and being legally blind — like my mother — took its toll when my vision started declining.

When I couldn’t explain why I no longer felt joy doing the things that normally made me happy, I sought professional help and discovered the root cause of my negativity stemmed from my worsening vision and fear I would be like my mother — depressed and isolated because of her vision loss.

Understanding why I was feeling so blue helped me "see it differently" and make sure I didn’t follow the same path as my mother. Although my diagnosis has not changed, my perspective has definitely changed!

Sharon

I have an occasional bout of anxiety about the future. My biggest concern is where I live. I live 15 miles from the nearest small grocery store and 60 miles from a Walmart. When I reach the point I can’t drive, life will be very difficult.

My strong faith and supportive family help me cope with the challenges of life with geographic atrophy. I am encouraged by my work as a Health Leader for the MacularDegeneration.net Community. Helping others is a good way to lift my spirits.

Q: What advice would you give to others who are struggling with their mental health after a diagnosis of MD/AMD?

Brown Eyed Girl

I would like those who are newly diagnosed to realize that it may be many years before they notice a change in their vision. For many people, macular degeneration progresses very slowly. They could possibly have a decade or more (as I did) to prepare for changes, if they have been diagnosed at an early stage.

Having the time to make changes and adapt is a good way to cope with anxiety or depression. Learning to make the most of the assistive technology available today helps us to feel we will be able to manage in the future.

Sharon

I would tell them it’s normal to grieve the potential loss of vision. The stages of grief include denial, anger, bargaining, depression, and acceptance. Give yourself time to work through these stages. If you find yourself stuck in one of the stages, seek professional help. Joining a support group would be helpful if one is available in your community.

Linda

Of course your mental health can be affected. It would be hard not to feel fearful about a future with macular degeneration.

When that happens, it’s critical not to isolate and close down. I can think of 3 critical actions anyone struggling should consider:

1. Reach out online to a nurturing and supportive community such as MacularDegeneration.net as a 24/7 resource.
2. Research and join a local group for the vision-impaired.
3. Schedule an appointment with a counselor to assist you on your journey. They can be objective, where often friends and family cannot.

My best advice: DON’T FEEL YOU HAVE TO DO THIS ALONE — YOU DON’T!

Q: How has macular degeneration impacted your mental health?

Have you experienced depression, anxiety, or other mental health impacts as a result of a macular degeneration diagnosis? Start a forum discussion today and connect with others in our supportive community.