Your feelings about your eye condition

Everyone's different, but there are feelings that a lot of young people tend to get in relation to their eye condition. In this section we describe some of these. Look for the ones you recognise and the tips on how to deal with them.

Sight Loss Counselling Team

 If you are experiencing feelings connected to your eye condition that make you worried, unhappy, stressed, or unsure what to do, you can get in touch with our Sight Loss Counselling Team. 

This is a confidential telephone and online counselling service and our dedicated counsellors work with many young people on lots of different issues they may be experiencing. You can refer yourself or be referred to them for a one-off talk, or for a series of sessions with the same counsellor if you feel you want to talk a problem through.

To make an appointment to speak to one of our counsellors, you (or someone you ask to do it for you) can ring our Helpline 0303 123 9999 or you can email, at any time, and they will get back to you. The email address is counselling@rnib.org.uk. A counsellor will then call you and arrange a convenient time to talk.

If you are aged between 11 to 18, download our young people's leaflet for further information below:

Getting in touch

To make an appointment to speak to one of our counsellors, you (or someone you ask to do it for you) can ring the emotional support team on 020 7391 2186 or you can email, at any time, and they will get back to you. The email address is ess@rnib.org.uk. A counsellor will then call you and arrange a convenient time to talk.

Feelings about sight loss

The information on this page is for anyone who has an eye condition and has experienced any sight loss or changes. It also can apply to anyone close to someone with sight loss - a brother or sister, a friend, a parent. When someone in our close personal circle is going through a difficult time, it can affect us too.

If you are an adult reading this, you might want to visit our Common feelings about sight loss pages.

When will feelings appear?

It depends on when and how your eye condition started. If your sight has been this way for as long as you can remember, then you might feel it's just part of you. It’s only when someone or something draws your attention to it that you might feel unhappy or annoyed in some way. The same can happen even if your sight loss is more recent.

You might be fine for ages, and then suddenly feel something new. Maybe it’s because things have changed for you. Has your sight got worse? Are you doing something new such as changing school or starting a new sport? Has something around you changed, maybe a new baby in your family or your best friend is moving away? Are your friends all getting into something new that’s harder for you to join in with, such as wearing make-up or thinking about driving lessons? All these things can make you feel differently.

What might happen?

Losing sight is like losing anything else important as far as our feelings go. It can involve a lot of different feelings. It's hard to say for sure because it isn't exactly the same for everyone. You might feel one thing for a long time, or have lots of different feelings in a short space of time.  Sometimes a feeling that had gone away comes back when a new thing changes in your life that affects your sight. Just pay attention to what it feels like for you because that's what you have to deal with!

What are the feelings I might get? 

Shock and denial

When something first happens, we don’t always believe it straight away.  If it was sudden, we might find ourselves unable to take it in – but also sometimes hard to think about anything else. This might have happened when you were first given your diagnosis and told what it might mean for your future. Even the clearest explanation might not have felt quite real to begin with. Even so you could react by crying or getting angry. Sometimes it feels as if we are watching it happen to someone else. All of these are normal reactions to something that’s a shock. People who care about you might be feeling some shock too, but as you are at the middle of it, it's important to let yourself get support from the people you are close to.

Shock usually dies down after a while as we take the news in. Denial can last a bit longer though. Sometimes we don’t feel ready to admit to ourselves that something is a struggle, so keep on doing things that are difficult until it's just no longer possible. It takes everyone time to take in the news, so don't worry. Once you can admit it to yourself, maybe you can talk honestly about it to someone you trust. Its only when we do this that we can begin to face up to the other feelings, and move forward to what ever will help us next in practical ways.

Anger and questioning

As we come out of shock and denial, we might feel angry, and want to know "Why me?" or "What did I do wrong?" Often when difficult things happen we want to know who is to blame - but sometimes the answer is 'no one and nothing - it just happened'.

We might also get angry with people around us - thinking "Why don't the doctors sort it out?", or "Why don't my family, friends or school understand how hard this is for me?" We might get bad-tempered more often than usual or pick arguments with people we are normally close to. Things like this can make us feel out of control and they are a bit scary until we get more of a handle on them. But sometimes getting angry seems easier than admitting we are scared, or don't know what to do. Accepting that something we don't really like has happened and won't necessarily get better isn't easy - but it's only once we do this that we can ask for help and move on. Again, when you can, talk honestly to someone you trust.

Helplessness, fear, anxiety

When things have changed and we don't yet know how we are going to cope, it's normal to feel these things. You might be tempted to give up and think there's nothing that can be done and life will never be the way it was supposed to be. Or you might be genuinely scared of going out when you can't be sure you can cross the road safely, or anxious when you think of things you want to do that now seem hardly possible.

The good news is that while you are young you have lots of time and opportunities to adapt. It will take time, but once you have had a chance to practise, that new computer software, or learning to use a cane, will make all the difference. The important thing to remember is that the feelings are not there to stop you. They are just a reminder that there are a whole lot of new things to learn and you just have to take your time. All of us can get a bit scared or worried when we have a lot of big challenges at once, so it's only natural. In time the fear will go as you realise how much you can achieve despite the odds.

If you get really panicky sometimes, get some help from a counsellor or a GP. There are reasons why we sometimes react in this way but it's really uncomfortable when it happens. You don't have to put up with it, but can learn ways to handle it from professionals.

Sadness

If your sight is changing for the worse, or if it's just becoming obvious that its different to other people's, you could feel very sad. It's natural to feel this way when you are losing something.

Like the other feelings sadness can come and go, or be worse sometimes than others. It's not only okay to cry - it can be good for you! Getting any difficult feeling out in the open gives it a chance to change. Lots of people say they feel a bit better after a good cry. You can do this on your own, or when you are with someone you trust to understand. Talking to someone who cares about you can also be a good way to let sad feelings out.

Sometimes we worry that if we start crying, we might never stop. But that doesn't happen (except maybe in some fairy stories). Once we have let some of our sadness out by crying, our body knows to stop. We release some special hormones (body chemicals) inside that actually make us feel a bit better for a while.

Depression

Depression is when deep sadness goes on for a long time (more than a few weeks) without any relief or better times. If you have even one of these things happening for more than a couple of weeks, then you might need a bit of extra help from a professional:

  • You can't face doing anything that you would normally do.
  • You don't feel like seeing your friends and family.
  • You've stopped eating properly.
  • You can't sleep at night.
  • You feel really bad all day every day.

This is even more important if you feel like harming yourself in any way. You should go to the GP - or get someone to take you - and explain what it's been like. GPs should take you seriously and keep things confidential whatever age you are, providing you can understand what they are discussing with you. You might need to be given some counselling help and your GP can arrange this, or you can talk to one of the young people's counsellors at RNIB.

If going to a GP feels a bit much at first, then start by talking to someone you trust or to any of the young people's helplines at the end of this article. They will encourage and support you to find the best way to get the right kind of help.

Keep your dreams!

If sight loss is new for you, or if changes have just started making a difference, it might feel like the end of the world. Maybe you can't imagine doing all the things you once thought you would do growing up, but don't give up too easily. The Paralympics in 2016 showed us just how much people with disabilities can achieve, and even if sport isn't your thing, the same is true of most things in life.

People with sight loss do all kinds of jobs, including top jobs. They have children and bring them up by themselves. They make art and music. They have friends and social lives. They fall in love and get married, and generally achieve what they set their mind to. Just like any one else in fact! No one's saying its all easy, but the most interesting things in life are often the ones that take some effort, as they feel like real achievements.

How long will it take?

This is hard to answer for sure, but the plain truth is that it's not likely to be over in a flash. If sight loss is sudden and it all goes at once, you are likely to feel a lot of shock. But at least it's going to stay the way it is and you know what you have to work with.

If you have the kind of condition that can change over time, there might be several times in your life when you have to make new adjustments. Each time, you might get some or all of the feelings back again. Don’t worry about this – just take each time as it comes, and build on the strengths you have already developed from the last time. Maybe you need to add some new tactics, but that’s okay because human beings are meant to learn from experience.

Sometimes in life it pays to get on and push through the difficult stuff, and sometimes we need to ask for some help. Both are good tactics, and the strongest people are those who experiment until they learn what works best for them in different circumstances. (Best to learn a few different ways to manage challenges if we can, as different things work best in different situations). And what you learn in tackling your sight loss will help you with other challenging times and give you a head start on dealing with them. So even the tough stuff can have a pay off in the end!
 

Emotional support

It's common to experience strong feelings about sight loss and there will probably be times when you wish you had some emotional support. We can help, talk to us.

Talk to somebody