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Life Beyond the OCT (Optical Coherence Tomography) Scan

Visualise Founder Daniel Williams discusses the importance of planning for your new life post-diagnosis

You happily go along to the optometrist, feeling good about life. Then comes the bolt out of the blue when the OCT scan reveals a problem. You need to be referred to an ophthalmologist.

Your optician will have been thorough and done his or her job, studying the photo of the back of your eyes. Something isn’t right with your vision and it is in a degenerative state. You are facing low vision or possible blindness.

It’s fine to be given the facts and an appointment for further specialist tests to ascertain more. It’s the routine. But you need more. Support, information and advice. You may also need equipment.

Feeling your way in the dark

Inside, your life feels like it has flipped over like a sizzling pancake. No-one appears to have thought about how you carry on…or if you can carry on. You walk out of the clinic feeling suddenly, terrifyingly, isolated. As you look around you, on the street everyone else seems fine. They can all see.

This change in your life needs support. The emotional impact may be the first area where you feel the need for some help as this is what often hits first. Losing your sight can feel like you’ve lost part of yourself. As the days pass, you now look around, and you’re the last person left on the planet, they’ve all walked off.

As it begins to dawn on you that you’re going to have to cope, fear kicks in. There’s no-one to talk to, no-one who understands. Except fear, which loves the idea of not understanding. It can take control.

All kinds of emotions run through you apart from shock and fear. You may feel angry or shrug off the diagnosis, in denial, and carry on up the High street. Bumbling along, bumping into people and lampposts, often unable to distinguish the difference, you keep going. Whether you have noticed gradual change or sight loss has suddenly happened, possibly after trauma, you’ve lost your way, in the dark.

See things differently

On seeing this emotional heap, your optometrist may also be at a loss. But if he or she could direct you to places where you can begin to reassemble your life…and help you to see in a different way, the days could slowly brighten. Life isn’t all bad.

Ask your optometrist about local support services, social services and charities which are focused specifically on sight loss. They will also inform you of benefits you can claim to help you along the way. Could your optometrist refer you to a specialist for a low vision assessment? These services will not only help you to accept sight loss emotionally but can also help with realigning your life by helping you to physically adapt.

Leave despair behind and concentrate on learning new skills. If loss of income is a worry, and may cause panic, many local support groups can help you to gain confidence in a related field or reassure you that you can continue in your present career and at the same workplace. A workplace assessment is an excellent way to begin.

Seeing is believing

With the correct support, from people who have been through the same feelings as you after a sight loss diagnosis, including sadness and grief, you may be surprised at your ability to cope and the strength that lies within. It may feel like a door has slammed shut in your face but as new doors open, new friends and relationships, together with new activities, will appear.

Remember that existing close relationships, family or friends, may also be struggling but finding some common ground here may be useful.

If depression does halt your progress, with all its associated side effects, you can also get counselling support to help lift you. This doesn’t have to be face to face; telephone and online counselling is available.

Ask your optician about the services offered by organisations like RNIB, Vision UK, The Council, Visionary, Guide Dogs and Blind Veterans UK. This pathway should also bring forth a host of other local support options.

Sight loss doesn’t mean becoming less assertive and accepting humility. You can become empowered, whilst retaining a good sense of humour. If you couldn’t walk in a straight line after one drink in the pub before sight loss, you may find yourself zigzagging all over the place for a while after sight loss. Get help from the people who know – and not necessarily the pub landlord – and you could be leaping over hurdles.

Talk, talk

You don’t have to hide away. There will be some difficulties; it’s not all plain sailing. Talk to people, friends, family, anyone who’ll listen; tell them how you are feeling and the difficulties you are experiencing. Simple things, from getting dressed, to having a shower, drinking, eating or preparing a sandwich all have their hazards. But as long as you don’t shave your head instead of your chin or open a can of dog food, thinking it is baked beans, you’ll be fine.

When you get in touch with a local support group, you can talk to a peer group of people who might encourage you to join in with a new activity such as a sport. This can be a great help.

Travel, education, using technology, the Equality Act, all these can be available to you when you know how to access them and how to get the best from what’s on offer.

Don’t forget your local Council. Get yourself registered as blind and you will find immense help on offer through your local disability support services, which will include a Blue Badge for your driver.

Ask your optometrist, too, if the eye clinic has an advisory service with a support officer. This can be a great opportunity to be given the relevant contact details for support organisations who can help get you seeing life clearly again.

No-one has said that change is easy and with the wealth of information around, don’t become overwhelmed and think you have to tackle it all at once. It might help to make a list of the areas where you most need help, such as with your computer or smart phone, getting to the shops, preparing food, and being financially secure.

Give it time. You’ll soon be like me, racing off to the pub after work and walking back home afterwards…in a reasonably straight line.

Written by Daniel Williams Man on a mission with low vision, leading the Seeing Beyond the Eyes movement.

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