I feel unbelieved/questioned with comments such as:
– Your eyes look still to me
– Can you still not see well even with your glasses on? Have you tried different glasses?
– When your eyes are still, I presume your vision goes back to normal?
– You’re walking ok today, that shows an improvement.
– You could do that yesterday, how come you can’t today?
– I know how you feel…I feel dizzy too when I get up too quickly or have too much alcohol (said with a chuckle).
Some helpful words:
– I understand how your vision is very variable. How is it right now?
– How does this condition impact you in day-to-day life?
– What do you do that helps? Is there anything I can do to help you right now?
– That sounds challenging for you. How do you manage your symptoms?
– Do you have the support you need?
– Are there any positives/new skills you’ve developed through having this condition?
– Shall we do something together that you enjoy. We can tailor it to your needs.
As a person living with nystagmus (acquired) there are many things I still enjoy doing, some things I can do with adaptations and some things I can no longer do.
When I am properly: listened to, believed, not pitied or judged, helped when needed and not treated as a problem or inconvenience…it makes life with this condition a bit easier to deal with.
People forgetting that nystagmus has no current cure and is a lifelong condition can be frustrating and saddening. When I have to remind people it’s an added drain on my energy levels and makes me feel unimportant.
If you know somebody with nystagmus – it’s really helpful when you inform yourself about the condition and be guided by the individual needs (and character) of the person living with it.
Thank you.