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You are here: Home1 / Retinoblastoma Resource2 / Medical Care3 / Treatment4 / Enucleation5 / Coping with Other People
A child life specialist uses a toy cat with removable eye to help a young girl receiving chemotherapy cope with eye removal and artificial eyes.

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Coping with People’s Reactions

People stare because they are curious, and react because they are afraid of the unknown.

Emotions run high in the days and weeks after enucleation surgery, and at times it can feel like everyone is staring. Coping with other people and their reactions can be very draining if you are unprepared.

If you feel able to, giving a simple explanation such as “she had cancer and the doctors removed her eye to save her life” is usually sufficient. A prepared, rehearsed response can give you confidence to respond.

A young boy models trendy eyewear after his surgery.

After the surgical pressure patch is removed, you have several options.

Patching

Some children are self-conscious, aware of the stares and able to verbalize their discontent. If your child is slightly older and expresses unease, or you are uncomfortable yourself, patches can reduce stress created by curious onlookers.

Patches come in different forms, from white gauze bandages and simple pirate style patches to elaborately embroidered, child-friendly eye coverings. Some materials can irritate the skin, especially in hot weather. So choose carefully to ensure skin can breathe properly underneath.

The patch may reduce unwanted attention from strangers, but most parents find people still look or ask questions. Many use the patch only in public.

Wearing a patch can also prevent a curious child from poking the eye socket, and provide a shield against dusty, polluted environments.

Patches can cause children to feel the loss of their eye is something to be ashamed of – that it should be hidden and not talked about. If you use a patch, ensure you talk to your child about it, and emphasize that losing an eye is not a bad thing.

Don’t force your child to wear a patch if she doesn’t want to. You will gradually establish what is right for both your child and you.

Glasses

Glasses protect the remaining eye from injury. Introducing them immediately after enucleation will foster the habit of wearing them. Regular polycarbonate glasses conceal the lack of an eye from the casual observer, while sunglasses also provide added protection from harmful UV rays.

Glasses are a normal fashion accessory that should not attract unwanted attention.   A number of specialist retailers supply glasses for infants and small children.

Try to encourage your child to wear the glasses as this is good practice in protecting the remaining eye. However, don’t force the issue as stress levels for you and your child are likely to be much higher than normal. Other times will come to encourage wearing of protective glasses.

Your Child First

Remember that whether you choose to use a patch or glasses, you should do this because it is right for the comfort of your child and for you, not to make society feel more comfortable. Your child should always come first.

From Our Blog: Talking About Your Child’s Cancer Diagnosis With Family and Friends

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  • Retinoblastoma Overview
    • How the Eye Works
    • Retinoblastoma Biology
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        • Review the 12 Decision Making Steps
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