Supporting someone with macular disease?
When someone you love or care for is diagnosed with macular disease, you might feel worried and uncertain about the future. You might find it hard to know what to say or how you can help.
The Macular Society is here to help everyone with a macular condition – and their loved ones or carers. That’s why we’ve written this guide to explain:
- How macular disease affects eyesight
- How you both might feel about changes to their vision
- Simple, practical ways you can help every day
- Where to find support for you – and the person who has a macular condition
What is macular disease?
Macular disease usually affects central vision (what you see straight in front of you). People with macular conditions might struggle with
- Reading
- Seeing the television
- Recognising faces
- Blurry vision
- Blind spots
This will affect their ability to do daily tasks like
- Driving
- Cooking
- Hobbies
- Reading
Symptoms will vary depending on the exact condition they have, but side (peripheral vision) is usually not affected by macular conditions. Their vision might change over time and some days will be better than others.
How they might feel about their sight
Losing vision can be a challenge. Their quality of life is likely to be affected. Things may get better when they are able to adapt, but some things might always be difficult. Some activities might get harder if their sight gets worse.
They could feel:
- Frustrated or upset
- Isolated or anxious
- Worried about what the future will bring for their vision
- Less confident about doing things they used to
- Scared about being a burden to you or wider family and friends
- Worried about work or losing the ability to drive
- Frightened to lose their independence.
Everyone feels differently about vision loss and there is no right or wrong way to respond. Some people adapt very well without much help, but most people will have some worries and concerns.
How to deal with emotions
It can be tempting to ‘downplay’ how people feel to try and make them feel better, but this rarely works. It’s important to acknowledge their feelings, without judgement and encourage open communication. Some people might try to hide how they feel. Encouraging them to express their emotions can help to reduce stress.
Talking about sight loss
Some people with a macular condition find talking about their sight loss easy and are open about how they feel. Others might need more encouragement to discuss how their sight loss is impacting them. Your understanding of how they are coping is key to helping them.
Two questions you can ask are:
What can you see and not see?
Understanding how the person’s sight loss is affecting them will help you work out what to do to help them. Talk to them about your ideas for changes to things like lighting, the layout of a room or what new equipment might be helpful. Any changes you make must suit them, not just be what you think is right.
Some people with vision loss see things that aren’t really there. Have you seen anything like that?
As the brain adapts to a loss of vision, some people can experience hallucinations: seeing things that aren’t really there. They might be flashes of light, shapes, images of animals or geometrical grids.
These hallucinations are called Charles Bonnet syndrome and can cause distress. They aren’t a sign of mental illness. Letting them know that hallucinations are normal can help.
Ways to reduce hallucinations can involve:
- Changing the lighting in the room
- Shutting your eyes or looking away from the hallucination
- Getting up and doing something else.
Quick ways to help someone with a macular condition
Small actions can make a big impact:
Ask “how can I help you today?”
People’s needs can change day to day as some days symptoms might be better than others.
Encourage independence where possible
While it’s tempting to want to do everything for someone, letting them do things for themselves can help with their confidence. Don’t assume people will always want help – check first.
Keep things in the same place at home
Tidiness will reduce slips and trips and help them stay independent. When things are always available, it means people are less reliant on their sight to find things. Avoid moving things without telling them, as this can cause frustration.
Stay patient
Adapting to a new way of doing things can be frustrating for the person with a macular condition, but it can be hard for you too. Becoming a carer to someone who might have been very independent before can be a challenge – practically and emotionally. Staying patient and being flexible is important for you both.
Tips for helping with everyday tasks
Living with sight loss can mean a lot of changes to everyday tasks that were previously very easy. The sight loss they are experiencing might mean coming up with new routines, using low vision aids or having to do things you or they didn’t need to before.
Dealing with paperwork and reading documents
If they want you to, read their letters for them or help them to do so with a magnifying glass.
Help them to organise and file the most important documents.
Ask for documents in large print or audio.
Shopping
If they want you to, offer to go with them to help.
Write clear shopping lists with headings and sections for each type of product.
Try to shop at quieter times, like during the week rather than at weekends.
Use smartphone apps that have magnifiers and reading apps to magnify product details.
Healthcare appointments
Encourage them to tell you how they feel about upcoming appointments
Help them think about questions to ask healthcare teams
Take notes in appointments if needed.
💡Top tip: Local councils provide a social services assessment for anyone whose daily life is being affected by their sight loss. They can offer rehabilitation training, low vision aids and practical help to ensure people with sight loss can continue to live independently.
Supporting emotional wellbeing
Changes to vision can have a big impact on a person’s mental health. You can help the person you support by:
- Listening without interrupting and without judgement
- Working together on solutions
- Making plans for the future, and thinking about how you both might cope if their sight gets worse
- Making helpful suggestions for new ways of doing things
- Suggesting they ask for support from their GP if their mental health is suffering.
- Reassuring them that they are not alone
Looking after yourself
Helping someone with a health condition, especially if they are experiencing mental health problems, can take a toll on your health too. It’s important to take care of yourself so that you can continue to thrive. It’s much harder to look after someone else if you’re not feeling well yourself. Your health is just as important as theirs.
You might feel:
- Frustrated or upset that things have changed
- Tired and stressed
- Overwhelmed by what has happened
- Unsure about what to do next or how to help.
Ways you can help yourself include:
Getting regular breaks from caring duties
Even just a few hours away from the situation can help. If they need constant care, ask a friend or relative to stay with the person so you can go out and do something you enjoy.
Keep doing your regular hobbies
Whatever you enjoy doing, try and keep some time to yourself to read, craft, attend social groups or get some exercise.
Talk to someone you trust to express how you feel
You might not want to tell the person with macular disease exactly how you feel, so confide in someone else who will understand.
Ask for help when you need it
Other friends and relatives could be helpful, or you could employ someone when you need a break.
Speak to your GP
If you find your mental health is being affected, arrange to talk to your GP. Also remember to keep an eye on your health – attend regular checkups to make sure your health is as good as it can be.
Macular Society support available for you
We provide free information and support to those with macular disease, along with their family and friends, to help people keep their independence.
Refer yourself or someone you care for to counselling
Struggling to cope with macular disease or sight loss? Get free, confidential counselling from trained professionals. Emotional support for individuals and carers.
Support from the Macular Society
You are not alone – the Macular Society is here for you, whatever help, advice or support you require. We can offer:
A helpline for you or the person with a macular condition. Open Monday to Friday, from 9am to 5pm, our helpline advisors can listen, provide answers to your questions, or make referrals to our counselling service.
Support groups, which will help you find a community to ask questions, share advice and feel connected to others who understand what you’re going through.
Whatever you’re dealing with, you aren’t alone. Give us a call on 0300 3030 111 or email help@macularsociety.org for guidance, information and support.
FAQs
What is macular disease?
Macular disease affects the central part of the retina, called the macula. This leads to problems with central vision, which is used for activities such as reading, driving, recognising faces and seeing detail.
How much help should I offer?
Ask before providing help and be flexible. Some days will be better than others, so the help they need will vary.
What if they don’t want help?
Stay patient and keep talking and offering help. Ask what feels right for them and have regular conversations to make sure you’re offering the right amount and type of support.
My friend can’t recognise me in the street – why does this happen?
Macular disease affects central vision, which is essential for recognising faces. Your friend isn’t ignoring you, they simply may not see you. Approaching them directly, introducing yourself and greeting them warmly can help avoid awkward moments.
What are visual hallucinations and should I be worried?
Some people with macular disease experience Charles Bonnet syndrome (CBS), which are visual hallucinations caused by the brain adapting to sight loss. These are not a sign of mental illness. Some people find them interesting, but others may feel distressed. Talking openly about it can help.
How does macular disease affect emotions?
Being diagnosed can feel like a grieving process. People may go through feelings of denial, anger, sadness or frustration before reaching acceptance. Friends and family should try to be patient and supportive.
What should I do if I feel overwhelmed?
Looking after yourself is very important. You can’t help someone else if you are burned out or feeling unwell. Speak to your own trusted friends and family for support and reach out to your GP or social services if you need extra help. Regular breaks will help you to stay able to help the person with a macular condition.
What practical help is available to me?
Local councils provide a social services assessment for anyone whose daily life is affected by sight loss. They may offer low vision aids, rehabilitation training, or adaptations in the home to support independence.
Does having macular disease mean they can’t drive?
Most people with significant central vision loss will not meet the legal requirements for driving. This can feel like a big loss of independence, but there are still many ways to stay social and active. The Macular Society runs support groups that can help.
What support is available for family and carers?
Caring for someone with macular disease can be challenging. The Macular Society offers counselling, local and online support groups, and a free guide for carers. You don’t have to cope alone.
Be kind to yourself
Looking after someone with a health condition can be difficult and there will be days that things feel very hard. Your time, patience and understanding really matters – you are making a difference. Even when things are hard, try and be kind to yourself. Make sure to prioritise self-care so you can maximise your own wellbeing while supporting the person with macular disease.
The Macular Society is here for you at every stage. Call our helpline on 0300 3030 111. Lines are open 9am - 5pm Monday to Friday.
Free confidential advice and support
Call our helpline on 0300 3030 111
Lines are open 9am - 5pm Monday to Friday
About the Macular Society Helpline
Find a support group near you
We provide virtual and face to face support, sometimes one to one and sometimes in group settings. We also run regional information events. So whatever your circumstances, there will always be an option that suits you.
Last reviewed: August 2026
Next review date: August 2028