I suffer from extremely photosensitive seizures.
This means any change in lighting is a trigger (eg leaving our gloomy house and going into daylight), TVs are a trigger, florescent lighting is a trigger etc etc.
So I have to wear goggles, and they reduce the amount of seizures I have outside of home by about 30%, more if I’m somewhere extremely bright.
Those are welders goggles, and these are ski goggles. I use both depending on the type of lighting I’m battling or how bad of a day I’m having.
You would not believe how much attention I receive, simply because I am wearing goggles 🙄😞
I mean, they’re not that big a deal, right? Wrong, according to the rest of the world 😫
Reactions vary from the mild – staring as I walk past, often staring with mouth agape (no honestly, this happens ALL THE TIME!).
To the ridiculous and rude – from laughter and cries of “what the fuck” and “nice goggles!”, to the comments I hate much more. These come from people who see their comments as innocent, or funny – certainly harmless.
BUT THEY’RE NOT 😑
These comments are usually along the lines of…
- Forecast snow today are we?
- Going deep sea diving?!
- Oh wow, is that the latest fashion accessory?
- Why are you wearing those? Oh they’re for seizures? Do they work? Do you wear them at home? Can I try them on?
- Hey, look, a bank robber!
To anybody reading this thinking ‘well I don’t think any of those comments are that bad!’…it will be hard to get you to understand how they make me feel.
The thing is, when you’re already aware you’re attracting attention, and you’re already battling the difficulties of a disability, these comments are almost more than I can bear!!
They remind me I’m different, that people can’t see past that, that people are laughing at me. That I’m being watched ALL THE TIME because of goggles I have no choice but to wear…I’m constantly thinking ‘can I risk not wearing my goggles here? Am I bad enough I *have* to wear them?’
These comments force me to interact with people, and to disclose my disability. People are fucking rude!!
But more than that I shouldn’t have to deal with these comments!!!
Sometimes it’s not about them making me feel sad, it’s just about…well, people should learn to mind their damn business! I should be able to go out and not have to worry about comments or questions! Just as (most) people wouldn’t think it okay to say to a wheelchair user “too lazy to walk?!”, making a ‘funny’ comment about my goggles isn’t okay either! I don’t owe you an explanation, and you can keep your bullshit humour to yourself…I’m sure I’ve heard your ‘joke’ dozens of times before anyway 🙄
I HATE having to go out in my goggles, but *especially* to busy places, such as restaurants or towns. I see people staring and sniggering dozens of times, and get at least a few arsehole comments for every hour I’m out…it makes me hideously aware that I’m different and look ‘stupid’ 🙄
So next time you see someone different, and feel like making a humorous comment about it…just don’t. There’s really no need.