A topic that doesn’t get enough attention is the emotional and mental health impact of macular degeneration. From the shock and fear of an initial diagnosis, to the unspoken grief that can attend the impacts of vision loss including loss of independence and access to activities that give you a sense of identity and purpose.
Please keep in mind the outline below covers general trends. Your experience will depend on your circumstances, your innate personality, your access to a support system, and your coping style. There is no one “right” or “wrong” way to feel about your diagnosis or vision loss.
Handling a Diagnosis
The initial diagnosis of macular degeneration can be overwhelming, leaving you feeling shocked and in disbelief, even denial. Many patients report that when they receive the diagnosis, particularly if for early or Dry AMD, that their doctor doesn’t give them much information.
Once the shock wears off, anxiety and fear about the future can set in. You may find your mind focuses on questions like, “Will I go blind?”, or “How long until vision loss affects my independence?”, or “Who will take care of me?”
If you’ve been diagnosed with early, or Dry AMD, there’s plenty of hope! You have time to educate yourself, and empower yourself. There are many things you can do to help slow the progression of your disease and reduce the risk of developing wet AMD (or, again, slow it down). Lifestyle changes, the AMD Diet, and supplements can all help.
If you’ve been diagnosed with late stage Dry AMD (geographic atrophy) or Wet AMD, your best course of action is to begin sight-saving treatment as soon as possible. Hopefully you’ve already educated yourself and spoken to your doctor about your options so you are better prepared for this transition. If not, do your best to trust yourself and your doctor to make the best decision for your eyesight right away, and then educate yourself so that you can build trust in your doctor and your treatments.
No matter where you are today, there are resources for you to return to a sense of empowerment here on this website, and through other channels.
Caring for Your Emotional and Mental Well-Being Through Different Stages of Macular Degeneration.
Early, Dry, No Vision Loss
Once you get past the diagnosis, if you are not yet experiencing changes to your vision, the main threat to your emotional and mental well-being is letting fear of the future get hold. Your fears may be based in very real circumstances you’re facing, but you have time to learn and plan. Whenever you feel anxious about the future, make a note of your worry, and a possible solution. Writing down your fears will help your mind let go of perseverating, and will help you remember issues you want to find potential solutions for.
Early, Dry, Mild Vision Loss
At first, your vision loss may be more frustrating than debilitating. But small frustrations have a way of piling up and affecting our mood and mental health. Frustration can lead to bitterness, or affect how you treat your closest family and friends.
Don’t let frustration pile-up unchecked. Contact your eye professional and find out if they have any resources for you, or a referral to low vision services. Start adding modifications to your tasks like adding more light and magnification. Find new ways and new tools, or even new hobbies! Some artists turn from painting to sculpture to address the changes in their abilities due to vision loss, and discover a new path for their creativity!
Social isolation can also start to creep in, even with mild vision loss due to difficulties with driving, reading (a menu, for example), or recognizing faces.
At the intermediate stage, vision loss progresses, and can lead you from frustration and some social isolation, to feeling helpless, or hopeless as you cope with loss of independence and a sense of purpose. This can lead to depression if left unchecked.
It is important to be able to safely grieve these losses. In fact, Psychologist Anne Wagner (who is legally blind from Retinitis Pigmentosa), says that you have to allow yourself to grieve at each major stage of progressive vision loss.
Finding a support network, and a trusted ear (friend, family, spiritual advisor, or therapist) will be key to creating the time and safe space you need to grieve, accept, and adapt to each new progression in vision and independence loss.
Late Stage – Geographic Atrophy or Wet AMD
Vision loss can be moderate to severe at this stage (though, not for everyone!), and have more impact on daily life and independence. The best antidotes are:
- Low vision rehabilitation – learn new ways, and new tools, to navigate your world and your tasks!
- A form of therapy that matches who you are – there are many forms of therapy these days, and from many sources.
- A support network – even if your natural support network is lacking, there may be local or online groups you can participate with.
It’s important to note that:
People with AMD are seven times more likely to experience depression than those without vision loss.
If you or someone you know is struggling with the emotional or mental health effects of AMD, please reach out to: