Your Questions Answered

Find answers to your questions from the Visionaries on living, and supporting others, with low vision.

Whether you, a family member or friend has recently been diagnosed or you’ve been impacted by low vision for some time, you’re not alone. There are many people who’ve gone through situations like yours.

Your Questions Answered is a community based forum, providing people living with low vision and their supporters with knowledge and advice based on real, lived experiences. 

Our Visionaries have provided their responses to commonly asked questions from the community, to help you in your everyday.

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Search for common questions using the categories below. 

The first signs of low vision

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Diagnosis

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Treatment and care

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Living with low vision

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Supporting someone

with low vision

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The first signs of low vision

Changes to vision often happen over time, sometimes so gradually it can be easy to miss, or the fear of the unknown can make seeing a doctor a daunting step. If you’re experiencing changes in your vision, and have questions about what you can do, hear from Jill and Caryl on their early experiences of changes to their vision.

  • Who should I contact if I’m noticing my vision is deteriorating? Would this be my general practitioner or an optician?
  • I am noticing my vision is getting worse. Who should I talk to and what is the process of getting tested for eye disease?
  • What were the signs and symptoms of having an eye condition for you? What made you notice that your vision was deteriorating?

Diagnosis

The fear of a potential diagnosis can delay finding out what is the route of the low vision and delay taking steps to manage it.

  • Why is it best to get diagnosed early? Can I not just wait and see?
  • I feel nervous about getting diagnosed. What can I expect?
  • Are there any questions I should always remember to ask my doctor when I receive my test results? What should I do if I get confused?

Treatment and care

The thought of making decisions about treatments and managing low vision can feel overwhelming. It is good to speak with your doctor about your options and can be helpful hearing from others also living with low vision.

  • I am nervous about my treatment, what should I do?

Living with low vision

When it comes to adapting the everyday tasks to suit your unique needs, it can feel like losing independence. Listening to yourself and making small changes can empower you to keep enjoying the things you love each day.

  • How can I maintain my independence and do everyday tasks such as driving my car, doing my job and taking care of my family? What impact will a diagnosis have on my social life?
  • How can I speak to family and friends about my condition? I am worried they will not understand

Supporting someone living with low vision

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Witnessing a loved one experience and come to terms with low vision can be emotional and worrying. Being there for each other through this journey and knowing there are others experiencing similar experiences can offer some comfort.

  • I am worried my loved one might have the signs of a retinal condition, but they’re reluctant to go to the doctors. How can I persuade them to go?

    As with any medical condition, sometimes we are reluctant to go to the doctor because we don’t wish to know that anything is wrong. When my wife, Jill, realised she had a sudden change in her vision, we knew it was essential to seek professional help. We talked about how important her vision was so we went directly to a specialist. This is something we’re able to do in the US but the referral process may be different in your own country. I’d recommend finding out what this is. 

    Saving Jill’s vision in her right eye was all we could do as her left eye was scared beyond repair. Time was essential to Jill’s current status, and waiting would have been seriously detrimental.

  • My loved one has just been diagnosed with a retinal condition. What should I expect?

    There have been many changes to our lives due to my wife, Jill’s, diagnosis. First and foremost is her depression of losing her career as a nurse. Immediately after the diagnosis, Jill stopped working for a year until we could find the correct low-vision glasses and treatment to help her see better. She was then able to work for about 22 months before being forced into retirement due to her vision. She was depressed, and rightfully so.

    My wife is a strong independent woman who now relies on many people for transportation and other daily activities. As a result of Jill’s retirement, we had a change in income and many visits to insurance doctors to verify the disability. My days off are spent mostly taking Jill to one doctor or another, most of which are regarding her vision.

    On the plus side, we are closer now than ever before. We have been married for over forty years and I have learned to appreciate our time as it is imperative to do as much as we can, “see” the world, and travel when possible. We are unsure of the future, and we live very much for today.

  • How can I connect with other supporters and carers of people living with low vision?

    My wife, Jill, spends a lot of time on internet blogs that revolve around her disease. I follow her lead in this area. She sends me articles and websites that she finds interesting and sends me information via email. Jill and I spend a lot of time talking about her retinal condition with friends, family, and others as they ask about Jill in obvious times of her needing some type of special assistance. This is especially true when we are out, and she uses magnifying glasses to help her read a menu or something similar. This action always initiates a conversation.

  • Someone close to me is living with low vision and I feel like I could give useful information to the doctor about how they are coping. Is this appropriate?

    As a husband and wife team, I go to almost every doctor’s appointment that my wife, Jill, has. She was diagnosed over seven years ago. Not only do I attend her appointments, I also go to see her low vision specialist.

    These providers are as familiar with me as they are with Jill. While Jill and I discuss everything we think the doctor should be made aware of, I certainly feel the physician must know how Jill is coping if she does not tell them. With that being said, I would never do this or say anything without discussing the situation with Jill before saying something to the doctor.

    Honesty and openness are the best way to proceed with this concern. While Jill does not want to accept that she is struggling more than the previous month, I must give her my honest observation to help her through the rough times.

  • What options are there to adapt our home so my partner or family member can retain his/her independence?

    We have invested in many things to help my wife, Jill, around the house. The first purchase was probably the large-screen computer that offers many features regarding accessibility. We have purchased many, and I do mean many, magnifying glasses. We have every size and every strength. We have bought many lamps to assist Jill with reading. Almost every light in my home is now on a dimmer switch, and many are on timers to help Jill before she needs help. 

    One critical lesson I have learnt was putting things away where Jill expects them to be. I mustn’t “just throw things in a drawer” as I had done before. We have become a much more organised home, which is important for Jill’s well-being and sanity. 

Discover more

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Meet Jess

Finding the right mental health support to help her feel more positive about the future

More answers to your questions coming soon…

Ask your question to The Visionaries

This page will be updated regularly. If there is information you would like to see, use the box below to share your question with The Visionaries team. 

The Visionaries will do their best to answer your question in due course. They are very happy to answer your questions around life with low vision, excluding any medical or treatment-related questions.

Your question will initially be shared with Roche, who produce this website and who will support The Visionaries in creating answers to your questions.