Invisible Disability Awareness

I have an invisible disability called stargardts. This doesn’t mean I see the same way that other people with stargardts see or the same way I used to see. Stargardts is a progressive disease that affects the central vision and everyone with it is at different stages of their vision loss journey.    I don’t need a cane or a guide dog, but it doesn’t mean I don’t need visual aids or support or that I don’t struggle with things that others who are fully sighted do so easily.

This picture was taken before a meal out with my husband. As my sight loss is completely invisible to others. what this picture doesn’t show is how many lights I had to use just to see my face and having to hold a magnified mirror an inch away from me to do my make up and how many times I had to re do my eyeliner. This picture doesn’t show the anxiety I felt in the car at night as my husband drove us because I can no longer see in front of me in the dark. It doesn’t show my husband reading out the menu at the restaurant because I couldn’t see the text or my husband leading me back to the car because the change in light as we left stopped me from being able to see the car across the car park.

I often find it so tiring having an invisible disability that others can’t see. The impact that it has on a daily basis is massive, yet nobody can tell. I have people surprised I don’t wave back to them across the road or see their phone when they hold it up for me to look at something on it… the list is endless. People just take it upon themselves to assume I am being rude because I don’t look like I have a disability, even people who are aware of it.

In 2017 I was diagnosed with progressive sight loss and progressive is the important word. My vision has declined since then and may keep declining for the rest of my life until I have no more central vision left. It doesn’t matter what I could see in 2017 or how many times I waved at someone across the road or laughed at something that was shown to me on someone’s phone, I may not be able to do those things now. When my sight loss was found, it was because it was no longer stable. Please be mindful that although some people’s disability is invisible to you, it isn’t invisible to us and it doesn’t just get forgotten as the years go by since our diagnosis.

Please also remember that although we don’t expect you to fully understand our situation, we don’t expect ignorance either and being mindful of someone’s situation if you are aware of it, makes a big difference. Don’t judge a book by it’s cover and don’t expect all disabilities to be obvious ♥️