Ask the Advocates: Accepting and Coping With Macular Degeneration
Last updated: April 2022
Change can be hard! Finding ways to accept and cope with changes in our lives – whether that is a decline in vision or something else – takes time. MacularDegeneration.net advocates share how caring for their mental health, finding inspiration in friends or family, and learning about MD has helped them accept and learn to live with this condition.
What does coping mean to you?
"Being an optimist, when I was first diagnosed about 16 years ago, I assumed there would be newer, better treatment, or even a cure before my vision was impacted very much. There still might be. With such a slow progression happening, including in my wet eye, I don’t normally worry about it. I know I’ll be able to manage, even if my central vision does deteriorate."
"For me, coping meant knowing when to ask for help – such as driving at night. I’m very self-sufficient and independent, but today, I know many with AMD who live independently with a high-quality life, which gives me great hope. As a writer and moderator, I get much gratification by 'paying it forward,' which significantly helps me manage negative emotions."
"I feel fortunate that my vision loss is not extreme, yet. It can be frustrating at times but not overwhelming by any means. The challenge I feel is knowing that this loss will not improve and potentially will only get worse. When I think of that I can easily be overwhelmed with that big 'what if' with regard to my future and what I could potentially lose."
"Occasionally I get very worried, and then I try to pull myself out of it and tell myself that worrying is just a waste of time for me. I do this by planning for what might lie ahead. I anticipate the daily tasks and activities that I might have difficulty with down the track and work out how I am going to handle them. I know where my parents had trouble, so I concentrate on those areas."
"To me, coping means being happy anyway. Knowing that I can't ever get my vision back and that I could go completely blind in my central vision used to threaten my serenity and happiness. Not anymore. We get 1 life, and I simply refuse to let this stop me from living mine in the best ways possible."
"Early on in my diagnosis, say the first 2 years of this 9-year journey, was the worst for me. I discovered gnashing my teeth and wringing my hands was pretty futile and nonproductive. Through knowledge comes peace has been true for me. Again, our low-vision peer group on the web has helped me so much with coping with my declining vision."
"I cope with my declining vision by doing all the things my retinal specialist has told me to do. I take my AREDS 2 vitamins, eat lots of leafy green vegetables, and protect my eyes from the sun. When I think of a time that I may be legally blind, I am comforted to know that I will have my peripheral vision enabling me to care for myself. I really do not worry about what the future holds."
What has helped you accept your macular degeneration?
"Watching both of my parents manage their lives with courage and grace while having macular degeneration has helped me accept my situation. I can't change my diagnosis, so I just have to move forward. I don't want to spoil the good days I have now by worrying about what might happen in the future. I do, however, have to plan for the future."
"My faith in God is the source of my strength. I find prayer and reading scripture inspirational and calming. I have family members and friends who are willing to help me in any way possible. My mother, who had wet macular degeneration, inspired me with her calm acceptance of whatever difficulties she faced."
"Education on Facebook and the web. Also, interacting as a moderator and advocate on MacularDegeneration.net has been a huge part of my acceptance of my low-vision condition. Peer groups that support one another have been so helpful for me."
"I experience the entire rainbow of emotions with my macular degeneration: Anger, sadness, anxiety, fear, and all forms of grief because let's be honest, this is a huge loss. But, as I work on my mental health, I'm able to focus more on gratitude. I'm grateful for the things I can still see. My diagnosis has shown me that life is a rollercoaster, and we don't always get to choose the destination. I manage my feelings through lots of therapy. The honest truth is that working hard on my mental health is what has helped me accept my macular degeneration the most. That, accompanied with controlling the things I can (my diet, lifestyle, and taking right-for-me vitamins) helps to accept this as my life."
"Professional counseling was a big help when I struggled with my vulnerability and concern about having to rely on others. For years, I was fiercely independent as a single mom, working full-time, and earning a degree part-time. The thought of having to depend on others made me very fearful. Counseling helped me sort it out."
"What has helped me the most is being able to work with what I have, even with the struggles of it. My world is a retired one, and I have time to work out solutions to the challenges that lower vision brings. My schedule is much more relaxed, so there is no pressure or stress to get something done."
"I think my research into macular degeneration has helped me accept my diagnosis. Knowing that the possibility of living the rest of my life with very little, or no change in my vision is more likely than not. We hear the horror stories too often and the positive not enough"
Share what works for you!
Acceptance takes time. If you are not there yet, that is okay! If you have reached peace with your diagnosis, what has helped you get there? Can you relate to any of our advocates?
True or False: "I've found a regimen that works for me with dry AMD."