How do I make work understand?

[Emma_Jayne]

So I was diagnosed back in January and I told work all about it I explained what is going off but they don't seem to understand. I even brought a booklet all about KC but the managers just put it in the bin without reading.

I know wear sunglasses all the time at work but all I get is teased by staff and customers a like. It's starting to get me down. I constantly have headaches at work because the lighting is so bright and I'm looking at screens. I've suggested that maybe I only do 2 hours on tills 2 hours off to help but they ignore me. I've also told them I struggle with date checking because the dates are so small and while doing that I'm meant to clean the shelves which are dusty and hurts my eyes more. How can I make the take me seriously. They seem to think I'm playing up to it. And that it's all in my head.

I've also been pushed into trying for manager which I didn't really want while I'm waiting for crosslinking as I dont need the stresa as it brings out shingles around my right eye meaning need time off work. I feel like I'm balancing on a knife point and I'm about to fall off.

[Anne Klepacz]

If your managers are ignoring the information you're giving them about KC, then it sounds like you need some professional advice. The charity Action for Blind People www.actionforblindpeople.org.uk have employment advisers who deal with all sorts of eye problems including KC (don't be put off by the Blind in their title!) They gave a very good talk at our 2011 conference, including how they had helped several people with KC at work. You can see and listen to their talk at www.keratoconus-group.org.uk/conferences/2011 And if you go to their website, you'll be able to find which of their local offices is closest to you.
And did you print off the leaflets on this site about KC and work at www.keratoconus-group.org.uk/sitev3/publications.html or is that what they threw in the bin?
Let us know how you get on. Under the Equalities Act, employers should be making reasonable adjustments for people like us.

[Loopy-Lou]

They should make adjustments but they don't always, especially in retail, catering, domestic work.

I find it helpful to have some pre-prepared answers for all the stupid quips and "helpful" comments and observations we're subject to.
With sunglasses, "oh the film star look" - "no the cornea transplant look" and go into details of surgery, i.e. ophthalmic trephine being like a pastry cutter on pastry cutting out the cornea, sewing in the new one, the joys of suture removal/rejection, how a direct blow to the eye could mean emergency surgery/possible blindness, and the light sensitivity is like someone shining a bright torch into your eyes, oh here's a little torch in my bag let me demonstrate...

Matter of fact slap it on the table answers

[Emma_Jayne]

I got in touch with then they referred me to access to work when through all the phone chats and everything then they told me they couldn't do anything until work have tried everything first. So now I feel a little trapped because the problem is work won't do anything. I'm at breaking point. I'm getting headaches every day from the light even though I wear sunglasses. And the comments are really starting to get me down. Especially from staff who I've told what the issue is. I just don't know what to do anymore. I feel so alone

[Jjoe]

I'm undiagnosed, but have had KC issues (mild, enough to cause near constant dryness/soreness and the usual ghosting, light streaks and stuff) and it really is impossible to explain in words to people just what things are like.

The next time I have an appointment at the eye hospital (this June, they cancelled my December one and didn't mention they took me off the register instead of rescheduling an appointment like the letter stated as I wasn't on an 'important' scale). I'm planning on bringing pictures and examples of just what it is like, I think the department at the hopsital will understand just from words as they have many cases, but anyone else (this includes standard opticians) just can't understand what I say, yet try relate my problems to something they can understand. Would it be possible to take physical examples to show whoever at work needs to be shown (something like this https://sites.google.com/a/albayati.com ... _I_see.jpg)

I hope you can work out a viable situation, it's really disheartening to have.

[CrippsCorner]

I understand your frustrations, and I'm sorry to hear how you're being treated.

My work place in general, is very lenient. I work in the NHS after all so I expect some sympathy! However one thing they just won't compromise on is the lighting in this place... they all shut the blinds and whack the lights on full beam all around me. I really hate it, and try to dim them down a bit but when you've got 5 people wanting them bright, and just me wanting them dim (or off) I'm fighting a losing battle

[KarenB]

I too have experienced problems at work. I requested to finish earlier as find it hard to drive in the dark. I gave them a letter from Moorfields explaining this and they 'picked holes' in the letter. They said it doesn't say what you can or cannot do. It explained fully about keratonus and problems you have with it. Well if I can't wear my lenses I cannot see. I did eventually finish earlier but every time things came up about hour changes I mentioned about not driving and I had to keep explaining. They gave the impression I was pulling a fast one. In the end I had to leave as couldn't face any more 'pushing ' my eye problem. I went elsewhere and gave same letter to new employer and they wanted an up to letter even though they never asked for a letter. I provided the letter voluntary to prove I wasn't lying to them. I left this job as couldn't face going through it all again. I'm now self employed working with my husband who is very supportive. I really feel for you all. It's because the eye problem can't be seen by people

[Emma_Jayne]

It is very hard to deal with buy I finally had a meeting with my manager and explained we've now changed my shifts so no driving in the dark and not having to look at tills I feel like I finally got through to them and the sad thing is that I had to throw a tantrum to be taken seriously. Because the being nice approach didn't work. Trying to explain didn't work but as of today I finally got there by showing them a website too that shows them how I see things. It's depressing that because it isn't an obvious problem that it isn't taken seriously.

[KarenB]

Very pleased for you that you finally got through. Sad you have to go to extreme measures. I tried the nice friendly approach but obviously didn't work,. Good on you