Opening up to your loved ones about your diagnosis
Receiving a wet age-related macular degeneration (wet AMD) diagnosis can be unnerving. People may feel fear and frustration.1 It is understandable if you find it hard to share news of the diagnosis with your loved ones and explain what it means.
Before you answer your loved ones’ questions about your diagnosis, take the time you need to process the information on your own. When you feel comfortable, open up to your friends or family members and let them know you are ready to talk. If you don’t know how to explain something, there are plenty of resources to help. You can direct your loved ones to informational resources like this website or a patient-led organisation website, which can do some of the explaining for you.
Your family and friends may still need some information about your personal experience, so they can better support you. Let them know how you’re feeling and what specific support you need. It can be easy to push people away and isolate yourself when dealing with changing vision. Set clear boundaries for how much you’re willing to talk about it, but don’t be afraid to let other people in if you need them.
A good place to start when discussing wet AMD is simply letting your friends and family know how it affects you. Tell them your symptoms, how your vision has changed and how that impacts your life. Relay information you received from your ophthalmologist to help them better understand what you’re experiencing.
The next step is to explain your treatment options. If they are a caregiver, they’ll need to know your treatment regimen and schedule so they can support you accordingly. Discuss ways they can help you through this time, including driving you to ophthalmologist appointments, picking up shopping or just lending an ear.
Finally, if you’re comfortable, share how you feel about the diagnosis and treatment. Explain the emotional impact it has on you. It’s important to have a support system in place which can help alleviate any stress or depression you may feel surrounding your diagnosis.
Coping with wet AMD can be stressful, and if answering your family and friend’s questions about it upsets or frustrates you, let them know. Don’t expect to have all of the answers. If one of your loved ones is your caregiver, suggest to them that they learn more about how to best support you by reading through the caregiver resources.
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Varano, Monica et al. “The emotional and physical impact of wet age-related macular degeneration: findings from the wAMD Patient and Caregiver Survey.” Clinical ophthalmology (Auckland, N.Z.) vol. 10 257-67. 3 Feb. 2016, doi:10.2147/OPTH.S92616
