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.
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. 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.
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 you might 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. Some days you might feel good about yourself and others might be a struggle. Paying attention to these feelings helps us to work out what we need to do to resolve them.
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 it sometimes might be 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 understand the other feelings, and move forward to whatever will help us next in practical ways.
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. 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.
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.
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 that 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 opportunities to adapt. It will take time, but once you have spent a few months practising that new computer software or learning to use a cane, you'll feel a positive difference. Remember that the feelings are not there to stop you, they're just a reminder that there are a whole lot of new things to learn. 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, ask a trusted adult, counsellor or a GP for help. There are reasons why we sometimes react in this way and it's really uncomfortable when it happens. You can learn ways to handle these feelings from professionals.
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 okay to cry – and it can actually be good for you! Getting any difficult feeling out in the open gives it a chance to change. Lots of people say they feel better after a good cry. You can do this on your own, or when you're with someone you trust. 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. 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 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 an adult. Talk to someone if:
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're 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 page. They will encourage and support you to get the right kind of help.
Often, it helps to find something small that you can do and that makes you feel good about yourself: do that and build from there. Whether that’s getting to school, reading or listening to a page of a book, or making your own drink. Try to build a little more each day, accepting that rest is something that you’ll need to build on too, and celebrate what you’ve learned.
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 it's all easy, but the most interesting things in life are often the ones that take some effort, as they feel like real achievements. If you want to see what's possible, take a look at this video about three young people in employment.
This is hard to answer for sure, but it will probably take a little while.
If your sight loss is sudden and it all goes at once, you are likely to feel a lot of shock, but you'll 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. 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. It's best to learn a few different ways to manage challenges if we can because different things work best in different situations.
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 pays off in the end!
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. 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.
Make an appointment to speak to one of our counsellors, you (or someone you ask to do it for you) by ringing our Helpline 0303 123 9999 or emailing [email protected]. 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:
Our team of regionally based Children, Young People and Family Support Officers are here to help. If you can’t find what you’re looking for, or you’d like to talk further about any of the above, then please get in touch with us by emailing [email protected] or calling us on 0303 123 9999.