Hi, at work yesterday when having a discussion with my manager and I was discussing a rota change that I know my fetigue will not allow me to do he made a comment about my ‘illness’. I see ms as a disability not an illness, but ??? Is it just words ?
An illness or disease that causes disability? i am still getting my head round my wife having it and have probably referred to it as all 3 often with a swear word added to the front!
Under the Equality act 2010 it is automatically counted as given the person the protected characteristic of Disability and certainly from your works point of view that is what they need to be aware of.
To be fair if you are not sure (and me either) how to refer to it and which sounds right,which sounds softer and less insulting/upsetting to the MS’er its possibly just words but its important that the company understands the correct legal definition from the Equality act.If you have seen an Oh person working on behalf of your company and its noted in paperwork thats good if not a quick email to HR maybe to get it down in writing for evidence purposes if needed as they would only need to comply if they were aware(don’t assume any verbal conversations on the matter even if they have happened dozens of times wont be denied,they are bosses not your friends)
Good luck
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Hello Sarah, I know exactly what you mean but, technically, the body is suffering from an illness. The thing is, no-one likes to think of themselves as carrying some kind of illness, or to be defined by it, especially when you’re trying to carry on as normal as possible - MS, it gets your mind playing with you…! I always refer to my MS as my condition rather than my illness, because it sounds a bit less foreboding, I guess. Good luck. Cheers.
Also, looking at things from the other side, it must be a nightmare for others knowing what is the right thing to say or “how should I put this?”. It’s a minefield! Good luck 
The cause of your disability is an illness - the MS disease process at work. But I think you’re right to concentrate on the disability aspect in this context - what you are asking your employer to do is to make reasonable adjustments to accommodate your disability (the effect) rather than your illness (the cause).
Alison
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hiya sarah
i prefer to use disease as my body is def not at ease!
like all things with this label we will all have different views-which makes it harder when you are trying to make a law/standardise it…
ellie
A Bloody Inconvenience is what I call it.
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disease sounds as if it’s catching. illness sounds as if it’s something you may recover from. not sure about disability/disabled - do these terms suggest restriction on what we can do?
what about a chronic neurological condition, which is how i refer to it formally. to my friends and family it’s just “this sh*t messing me up again”! carole x
I chop and change whether it’s a disease, condition, illness. But informally it’s f’ing MS. Sue
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Thanks guys, I was debating weather to give him feed back that he needed to recognise it as a disability & fatigue was the symptom of this disability that I need consideration of. However listening to your comments, telling him ‘it’s not an illness’. Is probably inappropriate. So thank you, I will have to think some more on how to get the point across re what I can /can’t do re hours. I need to tread carefully as I love my job & all I need is for them to recognise my needs re a stable shift pattern.
For lots of reasons it is problematic managing my needs and my colleagues wants / needs. It puts my manager in a difficult position. I will find a way to sort it .
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Hi Sarah,
With your great attitude your manager would be an idiot if he didn’t do his best to help you.
Good luck,
Anthony
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Hi Sarah,
As you are having a joint discussion (between employer and employee) things need to be kept clear, concise, and simple.
As such (avoiding any semantics!) you have a formally recognised disability - one which, as the responsible company representative, the Manager needs to respond to (as for any disabled employee) in an appropriate and professional manner in recognition of the Equality Act requirements on behalf of the company.
As suggested by OI73 above, a simple email sent from you after the meeting is a good way of getting the discussion formalised for the records, and also a good way of identifying the topics/actions discussed and/or to be taken by each of you. You should proactively write an email (regardless of possibility Manager does same) to ensure meeting is taken beyond being considered just a verbal non-specific ‘chat’
It is in this email you can also highlight that your MS-related fatigue is a debilitating symptom (not to be confused with a generalised tiredness felt by others), and as such will cause difficulties in you being able to cope.
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Sarah, I’d try to avoid the words ‘fatigue’ or ‘tiredness’ because they don’t really convey how we feel at times. Also people who don’t have m.s. thing our fatigue is the same as the fatigue they experience - which of course it isn’t. Point out to your manager that certain work schedules will make your actual symptoms worse.
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I would say, in the context, a chronic illness. Emphasis on the chronic ie, it doesn’t go away and its for life. Just to distinguish from say, measles…
That might get your point over.
A chronic condition with acute phases and sloooow recovery. And bone deep fatigue that makes just getting out of bed and dressed a challenge at times.
Sue