Sometimes, I just feel like I don’t fit in. This isn’t something new to be honest, struggling with debilitating anxiety from 14 years old onwards, gave me a good taster of what it is like to not feel accepted, or left out when you feel you have no will power to try and get yourself out of the house, or have to make another excuse why you can’t go to a party or meet up with friends. People accepted it, but never really asked why and then eventually, I just stopped getting invited to places.
I think the reason I don’t feel like I fit in anywhere right now, is because I’m a sighted person losing my vision. I don’t really fit into the sighted world now, but I also don’t fit into the world of vision loss yet either. I am not classed as legally blind, or even low vision at this moment in time, which is thankfully down to my foveal sparing, but my blind spots and wavy vision affect me most minutes of every day. Even when I was diagnosed, I wasn’t offered to see a counselor as I didn’t have sufficient vision loss, yet I was still suddenly thrown into this new world, but it didn’t feel like I should be there.
Maybe I’m the only person who feels like they are in limbo, I don’t know. I think it’s very hard for someone of my age to be diagnosed with something as heartbreaking as this but feeling like we don’t really fit into a specific category, it makes it harder to find help and support. Don’t get me wrong, I’m so grateful I have got to this age and my Stargardts hasn’t impacted my life dramatically yet, but that’s how I always seem to be made to feel, that I should be grateful. Grateful that when my licence is revoked, I have still had many years to drive, grateful that I am 33 and Stargardts hasn’t affected my vision to a big extent yet, grateful that I didn’t get it younger, grateful that I have seen my son grow up for all of this time, grateful that nobody else in my family has it, grateful that I can still apply make up relatively easily, grateful that I still have some colour vision, grateful that I can still read, grateful that I will keep a good portion of vision. Sometimes though, I don’t want people to make me feel like I have to be grateful. I can accept it a lot better from people who have Stargardts or vision loss, but I really struggle to accept it from fully sighted people. Sometimes I just want people to listen to me and not push how grateful I should be onto me, yet if I talk to other people with vision loss, I don’t want to make a big thing about it because my vision isn’t too bad at present. Sometimes I just want people to listen, but just say nothing, just let me get out my thoughts and feelings without trying to tell me how I should feel. I am grateful, but sometimes I’m not. sometimes I’m really scared, sometimes I just can’t believe it is happening, sometimes I cry, sometimes I’m angry, sometimes I feel this consumes me so much I can’t breathe, sometimes really don’t want Stargardts and I feel like life is so unfair. I just want others to know that this is ok, and nobody should make you feel bad for how you feel inside. It shouldn’t matter where we are in our vision loss journey, we should be able to express our thoughts and fears. I have also learnt that it’s ok not to feel like you don’t fit in anywhere, but to just keep being you and the right people will find you eventually and the people that leave you, weren’t meant to be there in the first place ❤️