You can read the full journey about my eyesight by clicking here.
I have lived with vision loss since early 2019 and I’ve learned a few things along the way. I’m still in my early years of living with a retinal disease and I’m sure I’ll come back in ten years with completely new life lessons, but for now, here are things I have learned in three years with a rare eye disease.
Losing your vision doesn’t actually constitute as an emergency according to my local hospital.
Before I lost my central vision, I actually went almost completely blind in both eyes. I experienced lots of bright wiggly lines in my vision and suddenly, I could only see a strip in each eye. I went to my local A&E and I was in the hospital for 8 hours before someone had been seen me, which was only because my husband actually took me into the eye department and we demanded for me to be seen without a referral or appointment. Then I was sent away with a very incorrect, lazy diagnosis of a migraine. I did think that being unable to see almost anything constituted an actual emergency, but apparently not according to my local A&E!
If you experience sudden vision lost, I would probably recommend you take yourself down to your local opticians or eye hospital, rather than attending a busy A&E department.
An occupational health referral is a good thing.
When I was first offered an occupational health referral by my manager, I didn’t really know what to expect. I’d only heard of occupational health referrals in a negative light, such as people being managed out of their workplaces. I have no idea why I thought that, but I wouldn’t have been more wrong. My occupational health plan put in place to help me has only ever been for my benefit and I feel more protected at work because of it.
Having ‘one good eye’ doesn’t mean that you actually have one good eye.
If you experience vision loss in one of your eyes, your ‘good’ eye has to pick up the slack, will get tired more quickly than before and can be affected by the vision loss in your ‘bad’ eye when you have both eyes open. Lots of people, including my eye doctors(!), keep telling me I’m lucky that I have one good eye, but my poor ‘good’ eye needs a break too, which it will never get. Click here to read about what I can and can’t see with my eye disease.
You have to tell people that you can’t see. All the time.
Everyone assumes I can see what I’m showing them. Everyone assumes I can read spreadsheets at work as quickly as they can (but I can’t see straight lines). Everyone assumes I can read the small text on their phone, see a picture on their too bright phone or computer screen, or read a sign far away that they can see with ease. If someone can’t see your disability, they will automatically assume you don’t have one.
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