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How we talk about our Rb

by | Sep 29, 2023 | My story

We spoke to teens and young adults who have had Rb about how they broach conversations about either their prosthetic eye or lack of vision:

Katie is wearing a light pink dress and smiling at the camera

Danni said, “I tend to vary my response depending on the age and understanding of who is asking, I volunteer as a Scout leader and there’s a wide age range of kids so if any of the young ones ask I tend to just say that I was poorly and had to have my eye removed to make me better, and because I have a gold eye they’re always interested and asking so I ask if they know about prosthetic arms or legs which most of them do and explain it’s like that but for your eye. With the older kids I go into a bit more detail about having had retinoblastoma and it being a really rare cancer because they’re old enough to understand properly what that means and the impact it had because we do a lot of disability awareness with them. With adults it really depends how they ask and what they ask, I’m happy to answer any questions they have about my eye and Rb because I know it makes people curious because it stands out, but I’ve had rude comments that I just don’t tolerate and decide not to answer.”

Katie is wearing glasses, looking at the camera

Katie said: “I personally never experienced any bullying or negative comments first-hand due to having a great prosthetic match every time; when my Rb story would come up in a conversation saying that I now have a prosthetic eye people tend to be shocked! But you can show an individual who you really are at first as a person, and how strong you are by answering them positively back by asking if they would like to understand more about prosthetic eyes, living with one eye, appointments etc.

Hold your head up high, as an Rb warrior you have been through a lot since the beginning of your journey,  more than what some people have been through in a lifetime! Never judge the individual’s visual perception, show them who you are and that you’re strong enough to answer them!”

Samih is stood against a beautiful blue sky, looking at the camera

Samih said: “From my experience, I have learnt that, although people tend to ask probing and what can feel like personal questions, it is mainly out of curiosity, rather than spite or harmful intentions. It’s important for parents as well as young people, living with retinoblastoma to remember that yes we might not be able to drive or do some of the things that are fully-sighted people may be able to do. However, we are still own wonderful people and we still have something to give to the world.

Independence is a must. Learning how to be independent from a young age and how you can adapt the necessary skills such as cooking wall, living with retinoblastoma matters, because the more independent person is capable of being the more they can bridge the gap between us and our sighted peers.”

Would you like to speak to someone about talking about your retinoblastoma diagnosis? Contact our support team at support@chect.org.uk or call us on 020 7377 5578.

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