LHON and Emotioinal Support

The Emotional Impact of Losing Sight

When someone loses eyesight due to LHON, it is a huge emotional and psychological blow. The physical impact is loss of central vision. This means that everyday things we take for granted become difficult or impossible. Reading, driving a car, recognizing people in the street, meeting friends, reading a menu, buying something in a coffee shop….the list seems endless.
During or soon after the eyesight loss, the person will be going through the stages of loss or grief. They may not happen in this order, and some stages may reappear. These stages can also affect close relatives and friends. These are all normal emotional states which anyone can feel.

 

Anyone affected by LHON, or close to an affected person, is likely to go through some or all of these stages more than once, and the stages can last for a long time and reappear, even after years.

Each person will react in his or her own way.  Having an emotional response to a huge life event is not a “weakness” or “failing”, it is perfectly normal.  Each person will also cope with these emotions in his or her own way, and will recover emotionally in their own time.

Emotional Support

A partner, friend or relative can provide a huge amount of emotional support just by “being there” and listening when needed. This can be difficult  for both people.

Sometimes people get a lot of emotional support by discussing things with others who have gone through similar experiences. The international on-line support networks have helped a lot of people and families affected by LHON.  Some useful links are at the end of this page.

The Emotional Stages

Denial

The person cannot accept or believe that the situation is real. They are trying to deal with the shock of the new situation. This is a deep-seated emotional denial, not a rational decision to ignore the facts. It may be the mental equivalent of the shock reaction to a physical injury – the person does not feel pain at first because the body’s defense mechanism is geared up to escape the situation. A while later they start feeling the aches and pains of the injury.

Isolation

Sometimes part of Denial, it is natural for the person to feel alone – that no-one else is going through the same situation, with the same reactions and feelings. This is particularly the case for someone with LHON, as it is a rare condition.

Anger

Not just anger at the frustration of dealing with everyday problems, this is an underlying Anger at the world – it can be directed at anyone and anything. Life seems so unfair and unjust. This can be a difficult thing for friends and family to deal with, as they may become the targets of the Anger. There is no easy way to deal with this situation, it is the highly charged emotions of grief finding a way to express themselves.

Bargaining

As a stage in the grieving process, this is an emotional state where a person feels that they need to explain and get some control over the situation.

This may be felt as a need to explain the LHON and find some trigger for the symptoms “it was brought on by drinking too much”, “if only I hadn’t taken up smoking”, “Maybe that drug my doctor prescribed triggered it?”. It may lead to people trying to make deals with themselves or with God – “If I start going to Church regularly again things will get better”, “If I become a better person my eyesight will be saved”.

As scientists learn more and more about LHON, and start to experiment with possible future treatments, these deeply held feelings will be supported by information, medical tests and eventually practical therapies.

Depression

The future can seem very bleak, combined with deep feelings of isolation, frustration and anger. Even if support is offered by family and friends, someone may be emotionally incapable of accepting it while in this phase of their loss. Even though there is a physical cause and reason for their pain, someone with LHON may get great benefit from psychological therapies such as CBT. These can give someone a set of psychological tools to monitor their emotional state and work through periods of depression. Friends and family can be a huge help during these times. The amount and type of support that works will vary a lot – sometimes practical help is needed, sometimes being someone to listen, provide a hug or even just being there.

Acceptance

This is a mental state of emotional calm and tranquility, rather than a fatalistic state of hopelessness. Unlike Depression, the person can take an interest in life, be positive about future plans and deal with practical problems.

 

Guilt

This is a very big impact on the mother or grandmother of someone with LHON.  It can also impact other family members such as a father.

It’s deep human nature that parents want to protect their child and help them.  When a child is affected out-of-the-blue by a disorder like LHON then the frustration and anger of helplessness is made worse by the guilt of not being able to “make things better” for your child.

On top of this, a mother or grandmother might feel that somehow LHON is “her fault” because the LHON gene mutation is in mitochondria passed down the maternal blood line.

There is no “fault” involved.

Very few people even know that they are carrying a LHON gene mutation.

Researchers are learning more about LHON every year, but no-one knows what exactly triggers LHON.  Almost everyone who carries a LHON gene mutation never loses eyesight.

 

Help

These are some things which might help someone affected by LHON, a partner, family member or close friend.

Contact with Other Affected People

Image of a Self-help Support GroupLHON is a rare condition.  Even your doctor might not have heard of it or had another patient with LHON. A lot of people feel that they are alone.  This can happen if you have lost sight, the mother of an affected person, another family member, partner or friend.

There are thousands of people across the world going through the same experiences.  Contacting some of them can be a huge help.

You don’t just get emotional support from shared experiences, you can get practical information and advice from people who understand what your family is going through.

Some ways to contact others are on the LHON Community page.

Counselling

Counseling GroupYou might get a lot of help by talking with a trained Counsellor.  He or She can help you to express pent-up emotions such as frustration, anger or guilt, without upsetting your loved ones.

Cognitive Behavioural Therapy

Cognitive Behavioral Therapy DiagramOften just called CBT.  This is a powerful way to examine your own feelings and actions (or lack of action). It helps you to develop mindfulness and understanding about your feelings and how they are driving you.

CBT can be done one-to-one or in a group.  Some people find that they get more out of a one-to-one course, and others find that they get more benefit from working as part of a group.

Learning about LHON

Learning LHON 101 Welcome boardYou might find that you feel better when you learn a little bit about Leber Hereditary Optic Neuropathy.

This does not mean that you have to become a medical doctor or some kind of scientist.  Just a little bit of knowledge can help you feel that you have more “control” about what is happening.

Rehabilitation Training

When you lose eyesight, through LHON or another cause, it is natural to feel that you can’t cope with anything. Everything you used to do is gone and you won’t be able to do it any more. When you are ready for it,  you might get a lot of help from some training in everyday living skills.

A good rehabilitation course does more than teach you a skill, it starts to rebuild your confidence and self-esteem.

A course is a good place to learn about “assistive technology” or “low vision aids”.  This is stuff that has been adapted or specially designed so it is easier to use without full sight.  Different people get along better with different aids. The important thing is to find out what is out there, try it out if you can, and decide if it is right for you.

That doesn’t mean you can pick up an aid like a very high power magnifier and use it easily in five minutes!  You might get JAWS Screen Reader software loaded onto your PC, but  you won’t be able to use it until you learn how.  That takes patience and practice.

Mobility Training

Stylized Man with White StickLHON takes away your central vision.  You can’t drive a car any more and you can’t see the people across the street.

It takes a while to accept it,  but a White Stick or White Cane can be a big help.   It can stop you from falling down the steps, and it can signal to people around you that you might need help finding those steps in the first place.

Even if you have enough eyesight to walk around and don’t usually need a white stick,  you should have one and learn how to use it.  Good Mobility Training can also teach you a lot of hints and tips on getting around, making the most of your sight, hearing, senses of smell and touch.

You might find that you have more confidence and get around better using a Seeing-Eye Dog / Guide Dog.   Like the White Stick, the harness on a dog should tell people around you that you have a problem seeing (but amazingly there are some people who don’t know what a white stick or seeing-eye dog means!).

Patience and Tolerance

Anger Management Smiley FaceI think everyone with LHON has some experiences in common, and all get very frustrated with coming across these attitudes from other people.  Getting confidence and mobility back will mean learning to grit your teeth and deal with them!

“You aren’t really blind” – people think every blind person has zero eyesight and can’t understand that almost every blind person can see at least a little bit.

“How many fingers am I holding up?” again people who haven’t been through it can’t understand how losing central vision can make you blind even if you don’t walk into the chairs.  Try to resist the urge to respond with a one-finger gesture or a fist!

“I’ll get you a wheelchair” – It is amazing that staff at rail stations, airports and other public places think that a blind person needs a wheelchair to get around.

“Does he take sugar?”  This is such a common thing that the BBC named a series on people with disabilities with this phrase. Talking to the person you are with instead of directly to you, as if you are stupid, deaf, dumb or all three!

 

 

Useful Links

Leber Hereditary Optic Neuropathy Facebook Group

LHON to LHON Facebook Group is restricted to people who have lost sight due to LHON so that they can share experiences privately.

RNIB Emotional Support Counselling Service UK

 

 

This page was last updated 12 August 2015

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