Hidden disability and works pension

LindsayO

I have MS and my employer knows (so that bit is not hidden) but lot's of my symptoms are. I work, part-time now (3 day week) as I can't manage full-time, but I don't see how I can keep going much longer.

I have meeting with my boss on Friday to discuss my current duties and I'm dreading it because I keep having conversations with people and they just don't seem to hear or understand how hard it is for me.

I want to apply for my medical pension but I'm afraid I won't get it because no one believes how disabled I am.

I have mobility issues, which I can work around. I have fatigue, pain and cognitive problems, and these really make it hard for me to do my job. I get lost if I go out alone. I get lost at work (I work at a campus university). I get easily muddled and forget to do things, but because I am so poorly supervised at work no one seems to notice.

When I talked to my neurologist he said "well you are not actually dementing". as if that meant I should be able to do my job with no problem. I am a university lecturer and I can't do mental arithmatic, or remember my own phone number or find my way to my lectures reliably. I often forget what I'm going to say, I'm pretty sure I get things wrong, but as long as the student's don't complain then my boss doesn't believe that I'm messing up.

I just don't know where to start

[Deleted User]

I assume you belong to a union,a good place to start would be a discussion with your union rep.maybe he would be willing to sit in on any meetings you have with your boss.Also a chat with your GP if he is more use than your consultant,you could even ask to be refered to a different consultant at a different hospital if that would help?

peskie_pixie

Do you have access to a specialist MS nurse? If so then contact her as i've always found mine to be very helpful regarding the day to day management of my symptoms, and as well as regular clinics/checks, she's happy for me to ring her if i have a specific problem.

If you don't have one then check with the hospital where you see the neurologist or ask your GP to refer you.

If you feel that your cognitive difficulties are having a serious impact on your life then it's worth asking/suggesting to your GP if a neuro-psychological assessment would be appropriate. There's more info here

As per Woodbine, i'd definitely talk to your union rep asap. If you're not in a union then contact the MS society either by email or phone on their free helpline number. They'll be able to offer you support and advice and put you in contact with the appropriate people so you don't have to deal with this alone.

Please try not to stress too much as i know this will only exacerbate all your symptoms.

Feel free to PM me

Mupette

what others have said, you really need to have a union rep with you for any further talks with your manager.

If you are struggling with work, your employers have a duty of care for you, access to work being one of them, are you sat in a correct chair etc HERE

LindsayO

Thank you all for your kind and thoughtful replies.
I am in the union, and they have appointed me a case worker, so I should call them
I do have access to the MS nurse so will call them too.
I have had a neuropsych evaluation. It was after seeing the results of this that the neuro made his comment about me not actually dementing

I'm feeling a good bit calmer now than when I first posted, and I realise that there are things that I can do to get help and support. But why do I have to work so hard to convince people of my cognitive difficulties? Why don't they just believe me, or say say things like "oh at our age we all get forgetful"

I asked my brother to help go over my finances to see if I could afford to live on the partial pension and he just plain didn't believe that I needed help. He is a maths teacher and so could certainly do this. He is also avery helpful person and will come over and weed my garden and things like that so it's not that he doesn't want to be helpful. That is just one example of how people respond when I tell them I can't do mental tasks like I used to

Mupette

sorry to hear what you are going through.

This is the reason i decided to give up work.

I have fibro amongst other things, but last year after being redeployed my memory was getting really bad, i couldn't remember simple tasks i was being asked to do.

I was treated like i was thick, to the point that i was spoke down to, laughed at, my pleas for help ignored, and the final insult was a capability meeting which basically my manager said if you don't pull your socks up then your not good enough for here and you will have your contract terminated.

Well the first thing i did was get the union involved, then read the capability paper work, and the first paragraph said not to give to staff who are disabled, have issues with work and their disability etc... pointed this out to my manager who admitted she had not read the policy before handing it to me.

several meetings later.... i basically gave up, like they had given up on me.

Everyday i had to explain why i was in pain, why i couldn't remember stuff etc.. this destroyed my self esteem, i hated going to work..

i handed in my notice, to concentrate on managing my illnesses.

Apart from my back going on me again, i am slowly coming to terms in relation of what i can and can't do.

LindsayO

Muppette, sorry you had such a hard time of it, the only reason I'm hanging in there is that I do have a good pension plan, my problem seems to be theopposite of yours, no one notices how "thick" I am now (not that I think you were thick, or people should have treated you that way, or that it's okay to treat someone poorly because of cognitive issues or because they aren't super high in intelligence).

hrafndot

LindsayO, how possible would it be for you to reduce your hours even more to allow you time to do the things you need to do? I've got PPMS and this cold snap has made symptoms even worse, for me. I agree with all the suggestions that others have made.

If your neuro has said, helpfully, that "you are not actually dementing", what ,if anything is he using to set as a benchmark for your cognitive skills? If he hasn't done a cognitive assessment, as mine hasn't, that comment is not helpful at all. However, it would be something to discuss perhaps with your MS nurse?