Emotions
Everything about LHON is emotion-laden, both for the individual affected by sudden vision loss and for their family members and other sighted supporters. All involved can benefit from speaking with a counselor, therapist, or psychologist to work through the grief, fear, and anxiety the sudden loss of vision can produce as discussed in this Mental Health: Navigating Support video.
Since LHON is rare, it may be helpful to supply your mental health provider with the booklet below. It was created by a mental health provider for other mental health providers, to give them an understanding of LHON and the emotional challenges those with LHON and their family members may be encountering.
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It’s normal for there to be tears and feelings of depression. It’s important for each person whose life has been impacted by LHON to work through the various stages of grief and not get stuck along the way. This video titled, “LHON Emotional Adjustment,” describes research about the emotional impact of LHON and offers suggestions regarding how to adjust. The emotional journey includes moving forward and falling back; it’s not a straightforward process.
Other causes of vision loss have very different emotional adjustment processes. When vision loss begins at birth, onsets gradually over decades, or begins late in life when pressures of education or employment are decreased, the impact is different from the typical LHON experience. An individual affected by LHON and their sighted supporters must deal with shock and grief at the same time as they are striving to adjust to rapidly diminishing vision. It’s a struggle to keep up with education, employment, maintaining a household, parenting, and more.
A major challenge of LHON is coping with loss. Losing the ability to drive may mean losing some of one’s independence. Losing the ability to see and recognize faces impacts social connections. Losing the ability to read standard text and watch TV requires learning new ways of accessing information and entertainment. Coping with loss involves grieving and mourning what’s been lost and learning to live well using different approaches.
An aspect of LHON that can create additional emotional distress is the possibility of, and hope for, partial vision recovery. The odds of partial recovery vary based upon the specific mutation and the age at onset of vision loss. It can be difficult to fully adapt to living with LHON vision loss while hoping vision will return. Whatever “recovery” occurs tends to happen slowly and is usually only partial, often with the affected person remaining legally blind. If vision does not improve at all, or not as much as is hoped, then the depression and sadness of the initial vision loss may be experienced all over again. Striking a balance between hope for partial vision recovery and acceptance of vision loss is an ongoing challenge of LHON.
Since an LHON genetic mutation is usually passed maternally, some mothers feel a sense of responsibility for or guilt about their child’s vision loss. Yet, we do not control our genetics, so there should be no sense of guilt. It’s helpful to focus on all the good genes that were passed to one’s children that will help them cope with this disorder, rather than to focus on the LHON mutation.
Keeping a positive attitude is one of the most important aspects of dealing with LHON. It’s easy to give in to sadness from the vision loss, but it is quite possible to live a full and meaningful life with LHON vision. That doesn’t mean it’s easy. Connecting with others who have lost vision and who are leading rich, productive lives can help with the adjustment to LHON vision.
Attending an LHON Conference is the best way to meet others affected by LHON. Visit the LHON Conference page for information about the next LHON Conference and a link to recordings of prior Conferences. Zoom events facilitate connection without requiring travel, and there are many Zoom events each year noted in this calendar. The Global LHON Facebook group offers lots of information and support, and smaller, targeted groups are listed on the LHON Community page.
Hadley offers free online courses for people with vision loss, including this series about adjusting to vision loss. APH offers much information about blindness, including this video about the emotional impact of a child’s blindness.
