Life with age-related macular degeneration (AMD) takes adjustment. Not only are you learning to adapt to new sight challenges, you’re also coming to terms with a lifelong diagnosis and what it may mean for your future.
It’s common to feel loss, denial, anger, and even depression after an AMD diagnosis. You may have a change in your personality and outlook on life. It’s important to stay anchored in the friends, family, and community who care for you as you navigate your new normal.
Staying connected to others can help you avoid depression, especially when you live with AMD. That connection helps protect you from feeling isolated, which often comes with vision loss, by giving you social support and a sense of belonging.
Signs of Depression
Studies show AMD is a risk factor for depression. The rates of depression for those living with AMD are higher than they are for the general population. This may be because of:
- Loss of independence
- A feeling of a lack of control
- Mobility restrictions (a hard time driving and limited walking ability)
- Feelings of embarrassment about lost vision
- Difficulty reading social cues, leading to more isolation
Depression can be hard to notice. It can come on gradually, and you may think it’s just the way things are now that you have limited vision. You may be dealing with depression if you have:
- Low energy
- Lack of motivation
- Trouble enjoying things you used to
- Changes to your appetite
- Trouble concentrating
- A numb or “flat” feeling
You may also feel cranky and sleep more than usual or less than usual.
Depression isn’t a personal failing. It’s a condition caused by chemical changes in your brain, and you can treat it with therapy and medication. The important thing is that you talk to others about how you’re feeling. Isolation can make depression worse.
Sharing your symptoms with your doctor or mental health professional is a great place to start, but reach out to the people who love you, too. Opening up about your struggles is the first step to moving through them.
How to Reach Out
It can sometimes feel like you’re the only one who has AMD, but you’re not alone. Many people are going through the same thing you are, and others want to help. When you are able to ask for social, emotional, and practical support, you can maintain independence for longer.
If you’re wondering where to start, try these steps:
- Think about who you’d like to include as part of your “team.” This can be close friends, loved ones, faith leaders, a counselor, or even neighbors.
- Have a conversation about what the world looks like for you. It can be hard for those who don’t live with AMD to know how it feels to go through everyday life with low vision. A demonstration or explanation can help them better understand the challenges you face.
- Come up with practical things your team can do to help. This may be as simple as “Have a regular coffee date to check in,” or “Drive me to the grocery store and help me shop once a week.”
- Include fun on your list. How can your team help you not just survive, but thrive? Add it to your wants.
As you’re reaching out and making social connections, these tips can help boost your mental and physical health so it’s easier to access the energy you need to do it:
Learn strategies for better living with low vision. Ask your doctor if they can recommend a low vision rehabilitation specialist who can help you modify your daily tasks for impaired vision. The more independent you’re able to be, the more control you’ll feel like you have over your life.
Make sure you’re getting physical activity. Exercise boosts mood, reduces stress, and helps your physical health, too.
Eat a nutritious diet. Foods rich in vitamins and minerals give you the fuel you need to feel well.
Follow your treatment plan. Take your vitamins, keep up with other treatment dosing, and see your eye doctor regularly.
Where to Find AMD Community
Beyond your friends and family, it’s good to have a place where you can connect with others who understand what it’s like to live with AMD.
Support groups have many benefits. Through a connection with others living with AMD, you can:
- Feel less lonely and isolated
- Gain a sense of empowerment, self-confidence, and control
- Learn healthy ways to adjust to vision changes
- Talk openly and honestly about your feelings
- Manage stress, depression, or anxiety
- Develop an understanding of what to expect with your situation
- Get practical advice and helpful information
- Discover resources, services, and devices that meet your needs
- Help and support others
- Be inspired and gain motivation from others’ stories
- Set goals
- Look toward the future with hope
Support groups aren’t group therapy. They may be peer-led by someone with vision impairment or someone who has experience with it, such as a family member. Nonprofit organizations often offer groups led by vision rehabilitation therapists, social workers, or nurses.
Some groups meet online, some are in person, and others offer one-to-one conversations on the phone. Try different types to see what works best for you. These macular degeneration and vision groups offer links to others living with low vision:
Lighthouse Guild. This not-for-profit vision and health care organization offers telephone support for people living with vision loss. From the comfort of your home, you can dial in to meetings led by a licensed professional who will support you as you cope with vision loss, help you find information and resources, and provide opportunities to network and connect with others.
Our Macular Degeneration Journey. This private Facebook group has over 8,000 members. Along with exploring and discussing evidence-based information, it provides a supportive environment for people living with AMD to feel respected and heard.
American Council of the Blind has a peer support and mentoring program that connects you to other visually impaired people who share your interests, such as musicians, artists, avid readers, people with other health conditions, and more.
Braille Institute has a free online emotional support group for people living with vision loss. They discuss topics like personal attitudes toward blindness, self-esteem, coping strategies, and more.
MD Support hosts a directory of support groups registered with the International Low Vision Support Group (ILVSG). Through these groups, you can find a group or learn how to start your own.
Rutgers Health offers a free peer-support phone line for those with vision loss called Eye2Eye. When you call, they match you with a trained peer support specialist who is also blind or visually impaired with a focus on sharing the experience of vision loss.
You can also ask your retina specialist for recommendations for local groups or advocacy organizations so you can be part of a community where you live.
Show Sources
Photo Credit: Johner Images/Getty Images
SOURCES:
Macular Society: “Supporting someone with macular disease?”
Journal of Visual Impairment & Blindness: “Depression in Age-Related Macular Degeneration.”
National Institute of Mental Health: “Depression.”
BrightFocus Foundation: “Macular Degeneration: Vision Loss and Mental Health.”
American Printing House for the Blind: “Support Groups: Their Role in the Adjustment Process.”
