Invisible neurological illness

#Giovanna

Hi. I’m Jo. This is my first posting. I have a brain tumour called an acoustic neuroma. Was operated on in 2013 to debulk the tumour. I still have 20% left and there’s a possibility it could grow again. I am left with severe balance issues, limited mobility, face & throat  palsy plus hydrocephalus. Also single sided deafness and deteriorating eyesight, All these ailments come with their own complications. (Still under the care of all the UCLH hospitals) But to look at me all you’d think is that I could’ve had a stroke. People sometimes stare,  I wish they would just ask me why my face is like it is, I’m happy to share my story if asked but I won’t just blurt it out as I don’t want people thinking I’m looking for sympathy. Some days I feel ok other days can’t bare to look at myself. Everyday is challenging but I’m breathing so I try. I like baking, find it therapeutic. I have a dog & 2 cats. I’m married to a wonderful man and have 3 grown up children, would love to chat with anybody and share stories 😊

#Giovanna

@woodbine and @Teddybear12 thank you so much for the warm welcome. Hope I’ve replied correctly, navigating new things can be a challenge but hope to join in more 😊

Jo_2022

Hello #Giovanna, thank you for reaching out. It sounds like you have a lot to cope with. I am sorry to hear about your brain tumor and other medical conditions. I think kindness is key, although unfortunately sometimes people with invisible illnesses can experience unkind behavior from other people. Personally I have two invisible disabilities myself, and I relate with your experiences. Guessing that you have positive aspects in your life to be thankful for. I always try to think of the things that I can do, instead of worrying about the things that I can't do; this makes me feel better 🙂.

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