Many medical challenges are immediately understood by the general public. With a diagnosis of cancer or Alzheimer’s, for example, people generally have a sense of the situation. LHON is different since most people have never heard of it, nor have they had any interaction with anyone with severe vision loss. Blindness is usually thought to be as an all-or-nothing condition, so those with LHON find themselves explaining again and again what they can and cannot see, and how they’ve lost central vision but may can get around using peripheral vision. Macular degeneration is a very different eye condition but the impact on vision is similar to LHON, so that can be a helpful comparison.
People often ask if you can have an operation to “fix” the eyes, or have an eye transplant. With LHON the eyes are working fine. The problem is with the optic nerves that transmit information between the eyes and the brain. The Retinal Ganglion Cells and their axons that form the optic nerves become unhealthy and atrophy. It’s like a TV cord that’s become frayed so the signal doesn't work. Since optic nerve cells can’t regenerate, the ‘cord’ can’t be fixed. In some cases, the optic nerve cells don’t die, they’re just sick, hence in those cases there may be partial recovery.
People affected by LHON are often told they "don't look blind.” If they don’t use a cane or a guide dog, people may not understand they have a vision issue. When people walk by and the person with LHON vision “ignores them,” or doesn’t say "hi" back because they can’t see the person who said “hello,” it’s awkward for everyone. Teaching friends to say “hi, this is so-and-so” upon approaching someone with LHON vision, and encouraging other friends ‘in the know’ to tell the person with LHON vision someone they know is approaching, can be a big help in overcoming this social awkwardness.
Since those with LHON vision usually have some peripheral vision, they tend to use that peripheral vision to see. They may look straight ahead so that others don’t find their gaze disconcerting, yet will look upward or to the side to see what they can using peripheral vision.
Truly looking straight ahead using LHON vision
Looking straight ahead trying to appear fully sighted
In social situations it's difficult to know who to talk to, and impossible to make eye contact or ‘read’ another person’s facial expressions. This can cause a sense of apprehension or unease and the more that sighted supporters can help out, the better.