Adjusting to Sight Loss - The Emotional Journey Nobody Talks About
Perhaps at first your vision changed little by little, until at a point you had to face the fact your eyesight wasn't what it used to be and you'd have to make an appointment with your doctor or optician. Or maybe it happened suddenly and turned your world upside down overnight. Either way, you may be finding that people around you focus on the practical side of things - mobility training, assistive technology, learning new ways to do everyday tasks. All of that matters, of course it does. But there's another side to this that often goes unspoken, and that's the emotional impact of losing your vision.
When your sight changes, it's not just about what you can or can't see anymore. It touches every part of your life - your identity, your independence, your relationships, your future plans. And yet, those dealing with sight loss find themselves struggling emotionally in silence, unsure whether what they're feeling is normal or whether they should just be getting on with it.
The grief of losing your sight
Losing your vision is a devastating loss and brings a great deal of grief. You might be grieving the life you had planned, the activities you loved, the ease of doing everyday activities without thinking about it. Perhaps you're grieving your independence, or the way others see you, or the version of yourself you thought you'd be at this stage of life.
Others might suggest you focus on what you can still do rather than what you've lost, but that's not necessarily how grief works. When it's happening to you, those feelings of sadness, anger, frustration, fear - and those thoughts like "why me?" - they're real and they're powerful, and you can't imagine ever feeling any different.
When others don't quite get it
One of the hardest parts of adjusting to losing your sight can be that sense that other people don't really get what you're going through. Well-meaning friends or family might say things like "at least you can still see something" or "you're so brave, I don't know how you do it" or "surely you should be learning to use a cane by now?" These comments, though usually kindly meant, can leave you feeling frustrated and isolated.
The truth is, unless someone has experienced vision loss themselves, it's difficult for them to grasp what it's really like. Yes, it's about bumping into things - and that's not trivial. Many people with sight loss live with constant bruises, have injured themselves on furniture or signs or tree branches they simply couldn't see. The frustration of touch screens everywhere - ticket machines, check-in screens for medical appointments - that are impossible to use independently. It's about needing help reading labels, yes, but it's also about the constant mental effort of navigating even the simplest things in a world that wasn't designed with you in mind.
The anxiety before social situations, wondering if you'll recognise people or accidentally blank someone, or having to explain what happened, how little you can actually see. It's about the exhaustion of having to plan three steps ahead. It's about the loss of spontaneity - you can't just stroll down a street and spot a cafe you like the look of and decide to stop for a coffee. And perhaps most painfully, watching everyone else get on with their lives - going to the cinema, browsing shops, meeting friends for coffee - whilst you've gradually given up the activities that used to bring you joy because they're just too much effort now.
The support that should be there but often isn't
Here's something that many find surprising and frustrating - when you're diagnosed with a sight condition, there's often very little in the way of emotional support offered. You might get information about your eye condition, perhaps a referral to low vision services for practical help, but rarely does anyone ask how you're coping emotionally with all of this.
Some people have wonderful local charities which offer both practical and emotional support. National organisations like RNIB do provide counselling services too, though demand far outstrips availability. Many people are left trying to live with feelings they can't or don't share with their nearest and dearest, whilst also dealing with all the practical challenges.
It can feel as though you're handed a diagnosis and then expected to just get on with it. But coming to terms with sight loss isn't only about learning to use a long cane or memorising your home layout. What's needed is a process of adjustment, adaptation and ultimately, to at least some extent, acceptance. And it's not a one and done process - someone may come to accept the loss of a driving licence, only later to find they have to accept never feeling safe to go out alone.
When your vision changes, it can shake your sense of who you are. Perhaps you were always the capable one, the independent one, the person others relied on. Now you find yourself needing to ask for help, and that can feel uncomfortable or even shameful. Or maybe you defined yourself through your work, your hobbies, your role in your family, and sight loss has made those things more complicated or seemingly impossible.
Then there's how to describe yourself. Are you "visually impaired"? "Partially sighted"? Do you use these terms at all, or does it feel like they don't quite fit? Sighted people often don't understand that most people with sight loss have some vision, albeit low vision. You might be told "you don't look blind" or "how come you're looking at your phone if you're blind?" Living in that in-between space - not fully sighted, but not identifying as blind either - can feel lonely, as though you belong nowhere.
Living with fear and uncertainty
If your condition is progressive, there's a fear that's hard to live with. What if my vision is worse when I wake up tomorrow? Within weeks or months, vision can change significantly. This uncertainty will make it difficult to plan, to make decisions, to feel secure in your future. How can you prepare for something when you don't know what's coming or when?
Clients tell me about being scared about the future, about becoming a burden, about losing even more of themselves.
You're learning what your new normal looks like - a painful process when you hate what that new normal is like - to learn what's possible and what isn't. That takes time. You're figuring things out as you go, and that takes a lot of mental and emotional energy.
The things you don't say out loud
When you're going through this, you carry thoughts and emotions you don't share with anyone. Clients tell me they've felt angry - at their body for letting them down, at the unfairness of it all, at a world that isn't designed with accessibility in mind. They've felt guilty for struggling when, as people sometimes remind them, "it could be worse."
These thoughts often feel too difficult or too uncomfortable to voice. You worry about being judged, about seeming ungrateful or negative, about adding to other people's worries. But keeping all of this inside is exhausting. Those unexpressed feelings don't disappear - they show up in other ways, as anxiety, as tension in your body, as difficulty sleeping, as pulling away from relationships and activities you used to enjoy.
What counselling can offer
You might be wondering what counselling can actually do. After all, talking to someone isn't going to restore your vision or change your diagnosis, but that doesn't mean there's no point in it.
Working with a counsellor who understands sight loss means you have a space where you can say all those things you can't say anywhere else. Where you can be angry or sad or scared without anyone trying to fix it or cheer you up or remind you to count your blessings. Where you can explore what this loss means to you personally, and begin to work out who you are now and who you want to be going forward.
It's also a space to learn how to dial down anxiety that's making it harder to go out or try new things, or the insomnia that's affecting everything. Counselling can help you recognise unhelpful patterns of thinking and learn ways of responding to them that feel more manageable.
You don't have to do this alone
Coming to terms with sight loss is hugely challenging. It takes time, it takes patience with yourself, and it often takes support. That support may come from family, friends, sight loss organisations, peer groups - all of these can be valuable. Counselling offers another way to be supported, one that focuses specifically on your emotional wellbeing.
If you're reading this and recognising some of your own experience in these words, you're probably considering whether talking to someone might help. Not because there's anything 'wrong' with you or because you're not 'coping well enough', but simply because this is hard and you deserve support whilst you're finding your way through it.
A first session is simply a conversation to begin to talk about what's been happening for you. There's no commitment beyond that, no obligation to continue if it doesn't feel right. It's a chance to be heard by someone who understands the particular challenges of sight loss, and to see whether counselling might be useful at this point in your journey.
A note about accessibility
I've tried to make my website and booking page accessible to screen readers, but if you encounter any problems, please let me know so I can fix them. I'm happy to communicate however is easiest for you - voice note, email, text, or anything else I can do to make the process straightforward.
Caroline Midmore is an accredited counsellor specialising in supporting people living with low or no vision. She is RNIB-trained and listed on their directory of sight loss counsellors. Caroline has personal experience of eye health challenges and understands the anxieties that come with living at increased risk of sight loss. She offers flexible online counselling sessions via video or phone for clients across the UK. Her relational approach draws on evidence-based tools when helpful.