Finding support

Some people worry that asking for emotional support is a sign of weakness, as if they are somehow expected to "be strong" and handle the situation on their own. However, solitude and strength are not the same thing; you don't have to be alone to be strong. Asking for support is one way you can take control of your situation.

Talking with family and friends can bring comfort and reassurance. In addition, many AMD patients find the mutual support of others with AMD to be a source of comfort, providing a connection in an experience that can feel isolating. Some would say that other AMD patients provide the best experts - others that have been through the AMD experience. Shared experiences and information is glue that bonds people quickly. It can provide comfort, companionship, and a safe place to go with fear, guilt, pain and depression. Not only is a "peer" network supportive, but it can also be fun and powerful. Laughing about the "weird" experiences one has as an AMD patient is best done with others who have walked in your shoes.

One thing to remember, any information you receive about treatments, low vision devices or rehabilitation should be discussed with your eye care professional to determine if it applies to your particular situation.

The Importance of Family and Friends

The importance of family and friends in helping the AMD patient learn to cope with their disability cannot be underestimated. At the same time, a diagnosis of AMD may affect family members as well, shifting roles and responsibilities. Spouses or children, unprepared for the role of caregiver, may find themselves thrust into that position, suddenly feeling more like a parent than a partner or child. At the same time, it is important to avoid being too overprotective, allowing the AMD patient to maintain as much independence as possible.

Provided below are some suggestions to help everyone deal with vision loss and the changing relationships and increased dependence caused by AMD:

• Do listen carefully to each other's feelings.
• Do provide reassurance and support.
• Do talk about feelings and fears that you or your loved one may be having.
• Do remember that it is okay to feel sad and frustrated.
• Do encourage, but do not force, one another to talk.
• Do seek help through counselling and support groups.
• Do not keep feelings inside.
• Do not force someone to talk if he/she is not ready to.
• Do not tell a person to "cheer up" if he/she is depressed.
• Do not blame yourself or another person for feelings of fear, anxiety, or depression
• Do not try to reason with a person whose fears anxieties, or depression are severe; get professional help.

You are not alone!

You might also find it helpful to know that you are not alone - although your experience of vision loss will be unique to you, others have had similar feelings and experiences. We strongly recommend that patients living with AMD consider low vision rehabilitation services, which are typically available through an agency in your area. Through low vision rehabilitation services, you will be able to learn tips and techniques for living well with vision loss. Services offered by low vision rehabilitation agencies vary from country to country, and even from area to area, but typically, a low vision rehabilitation agency will at least provide counseling and support (or referrals) and will teach you how to adapt activities of daily living.

If you do not know who provides low vision services in your area, you can begin to search for them in several ways: asking your family doctor, asking your retinal specialist, searching on the internet for "low vision rehabilitation services" together with the name of your city or area (ie search term: low vision rehabilitation services Bangor Maine), asking at your local seniors community or service centre, or by contacting us at info@amdalliance.org. Remember, you are your own best advocate, and you have a right to ask for what you need!

You may also be interested in reading about the experience of other people and families living with AMD. Please visit our new section on personal experiences of vision loss to read about other experiences with vision loss because of AMD. You are not alone!