1. Emotional Support
It is normal to experience feelings of sadness, anger, confusion and distress following diagnosis of vision loss whether it is yours or that of someone you care about.
It is often helpful to talk to these feelings over with someone else and there are many options available that can assist you.
At various times throughout your life these feelings may increase or be more difficult to manage. For example, things can seem particularly challenging in the early stages of learning to manage the disease, following periods of vision loss and deterioration, or simply in response to everyday life stressors such as studying, relationships, or employment.
Need help now?
Helplines can provide you with immediate access to support and advice that is confidential, free and anonymous. The following may be useful:
beyondblue 1300 224 636
headspace 1800 650 890 (12-25 year olds, family and friends)
Kids Helpline 1800 551 800 (5 to 25 year olds) or 1800 654 432 (parents)
Youthbeyondblue 1300 224 636 (12-25 year olds)
Counselling gives you the opportunity to discuss issues that are causing you concern in a safe and supportive environment.
Many people find that talking with a trained counsellor helps them to work out better ways to deal with things in either their life or relationships.
Anyone concerned about themselves or someone else can go to counselling.
You can find a counsellor yourself or seek a referral from a General Practitioner. Many workplaces also offer Employee Assistance Programs which provide confidential counselling and you don’t have to talk about work.
Live chat services can provide you with access to counselling or advice straight from your computer or smartphone in real time.
Some examples include:
eheadspace (12 to 25 year olds)
2. Self help and Support Groups
Self help and support groups can assist you to deal with life’s challenges. You can join a group online or one which meets regularly. Groups provide a great way to encourage and support each other, access information and education, and share experiences with people who can really understand.
Check out your local Retina Australia Office or vision support organisations for further information on a meetup group in your area. If one doesn’t exist, then perhaps you can think about starting one.
Social media provides the opportunity to connect with others with vision loss both locally and from all over the world. Groups may be general and include a range of relevant information or focus on a particular topic such as technology.
Popular Facebook groups include:
- Retina International Youth
- Retina Australia Youths
- Retina New Zealand Youths
- Blind Citizens Australia
- Retinitis Pigmentosa (closed group)
- Assistive Technology Community for the Blind and Visually Impaired
- Guide Dog Handlers Australia
Retina Youth Website Retina NZ – retinayouth.org.nz
Retina NZ has a youth forum for 18 to 35 year olds, a quarterly (email) newsletter, a Facebook group and a website, creating awareness and discussion on issues that specifically confront young people with a degenerative eye disorder.
3. Personal Stories and Blogs
Sometimes reading other people’s personal stories can be helpful. There are many blogs, websites, and articles available online that provide a personal perspective on living with vision loss that you might find useful and inspiring.
Read personal stories about how people just like you are coping and going about life with vision loss.
4. Help for Families and Friends
Vision loss happens to families, not just individuals. If you are a parent, spouse, other family member, or friend who cares for someone who is experiencing vision loss, you naturally want to offer comfort and support. See below, courtesy of www.visionaustralia.org
familyconnect.org (for parents of families of children with a vision impairment)
FamilyConnect is a website created by the American Foundation for the Blind (AFB) and the National Association for Parents of Children with Visual Impairments (NAPVI) to give parents of visually impaired children a place to support each other, share stories and concerns, and find resources on raising their children from birth to adulthood.
5. Advocacy Services and Support
Advocacy services work to improve the outcome for individuals and more broadly across the whole community. Some may act on behalf of people with a disability, their family and carers. There are also peer led advocacy services which provide support to each other.
Some helpful organisations include:
- Blind Citizens Australia
- Vision Australia
- Guide Dogs Australia
For further information on advocacy services in your area contact your local Retina Australia Office.
6. Coping and Adjusting
Reactions to vision loss have been likened to the stages of grieving that is experienced after the loss of a loved one—taking the person from denial to anger and depression, and finally, to acceptance.
Navigating the various stages successfully begins with understanding how they affect you and those around you. With understanding comes the ability to address conflicts, ease your fears, and move forward.
Successful adjustment to sight loss can be helped by adopting some of the common coping strategies:
- Take time to assess how you are affected by this information and what it means for you.
- Ask sensible questions of yourself and others. Be open and honest with those around you.
- Devise personal coping systems. You may not necessarily like the change but you can begin to accept that it has happened and be willing to work it into your life.
Some key things to remember:
- You are not alone.Vision loss affects many people from all over the world. Don’t be afraid to reach out to others experiencing vision loss, as well as to vision loss professionals, for information, advice, and encouragement. There is support available.
- You can continue to lead a full, rewarding life.If you’re willing to make adjustments, there is no reason you cannot continue to enjoy your favourite activities, participate in family activities, do volunteer work, or travel. Indeed, the challenges of vision loss are consistently overcome each day by individuals who have simply chosen to participate fully in society.
- You can continue to work.With technical assistance and relevant adjustments, most people who develop vision loss can remain in the work force.
- You can remain independent. Whether you are experiencing a modest vision decline or are facing total vision loss, affordable and accessible solutions and tools exist to help you to cook your meals safely, navigate your home and perform other essential tasks on your own. New advances in technology designed for people with vision loss are regularly made available, and mainstream products, such as computers, mobile devices and home appliances, can often be adapted for your use.
- Don’t give up Although a change in vision can involve difficult emotional reactions and adjustments, people who have experienced a loss of vision can continue to go about their lives and activities and remain independent in their own homes.