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A wee bit devastated

I am having a really horrible time. I’ve been going through a really difficult process at work and its now reaching its conclusion and I just can’t believe how very senior people have been allowed to act in ways which I think are probably not lawful. Also, it looks like I’m going to be penalised for having spoken up about this. I am in a trade union, thank goodness, so I do have some support.

I won’t describe the details of what’s been happening and I’ll be careful not to say anything too specific. In the most general terms though, I have experienced negative treatment at work which started when I told a manager that I was getting weird tingling sensations and had weakness and numbness and felt generally unwell. I only disclosed this because I wanted to be proactive in case it would affect my work. At that point I was doing really well at work, I was confident, got on well with colleagues and was generally getting positive feedback that I was doing a good job. But at a certain point I was feeling so unwell that I was worried I might temporarily fall behind and I wanted to be upfront about that, rather than get myself in a position where l wasn’t performing 100% with no explanation for it.

So I told my manager, who told me not to go and see Occupational Health, but then there was a period where things were pretty rough health-wise and I got diagnosed at that time with Transverse Myelitis. My neurologist told me that I had a 10% risk of getting a diagnosis of MS in the next 10 years. I informed the manager of this and that’s when things really started to go downhill. For one thing the manager clearly didn’t believe me and wasn’t subtle in the way this was communicated. So I self-referred to Occupational Health and they made some recommendations for reasonable adjustments which my manager didn’t like and in the end wouldn’t agree to. Eventually we got a sort of compromise adjustment arrangement worked out, but it took a lot of meetings with HR, union rep etc. I’m in a new work division now, but I’ve seen some pretty incontrovertible evidence that unfortunately there was a whole lot of prejudice transferred across with me to my new work unit. I was pretty much consigned to the scrap-heap professionally before I’d even started in my new team.

When an MRI scan showed up new lesions, and my neuro told me I probably had MS, I passed this info on to my new managers, thinking it might help if they understood that it was real. But this disclosure just made things much worse. I can’t give details, but it has really been awful. Then I got a confirmed diagnosis of PPMS. In some ways that is good, because at least there should be no reason now for them to doubt that I’ve been telling the truth all this time. I was accused more than once of “playing the disability card”. That was the exact phrase used. I know that a diagnosis of MS isn’t “good”, but I’m sure people who’ve been through the limbo experience will understand how a diagnosis can be a relief in some ways, even though it’s also scary.

I’ve read posts on here which make me realise how lucky I am, as I have still got good mobility and as far as PPMS goes, I’m at the mild end of the range of disability. But you guys will know how difficult even the sensory side of MS can be, and the pain, and the whole deal when your sense of your body goes AWOL in space. I get a LOT of tingling in my legs and sometimes that makes me feel very physically and personally undermined. It’s like I don’t have a solid foundation for standing and occupying my space in the world. Like that saying which goes “you’re on shaky ground”, but it’s my legs, not the ground, that’s the problem. All of that is manageable, and as I said, I’m lucky, but there are times when it is hard.

So to have this stuff going on at work is really hurting right now. I feel like my actual humanity is on trial, and it’s as if someone somewhere has decided it isn’t up to scratch. That maybe sounds melodramatic, but I’ve been reading abut bullying and apparently it is quite common for people to feel some version of this. I’m crying all the time. I can’t sleep. My MS symptoms are worse. I walk just a few metres and my legs will be buzzing and tingling and I actually feel angry with my legs, which is stupid and pointless, but I wish they’d shut up and stop reporting nonsense information to my brain. Actually, no I don’t wish that, because it would be even worse if my legs would stop sending information to my brain.

I think I’m really, really stressed. I’ve seen my GP and I’m seeing a CBT psychologist, so I’ve tried all the channels for support. But every night I’m lying in the dark and it’s not good, and I don’t know how to get back from here. I’m so sorry for making such a desperate post, because I know people are dealing with so much worse than this.

If I delete this post later, please don’t worry about me, as I’m not sure about posting it, but I know I will be ok, and I am definitely not a risk to myself or anything like that. I will be ok, maybe I just need to post this like a message in a bottle, and I’ll be ok again when I’ve had time to gather myself.

Also, if anyone replies and I don’t get back to you soon, it will just be that I am hiding under my duvet and getting my head back together.

space-monkey,

sorry to hear you are having a tough time.

I hope you get some decent support soon.

don’t worry about replies to replies, you have bigger fish to fry…

M

Aw S-M

I’m so sorry. That sounds like a really crappy situation you’re in. And it’s impacting on your self confidence and even self worth. Which is truly horrible.

What a bunch of A-holes.

You know it’s utterly irrelevant what other people are experiencing that could be considered ‘worse’. What’s important is that you are having a dreadful time. And stress does MS no flaming good at all. So it’s a never ending circle. You feel stressed, your health get worse, you get more negative feedback from work, you get more stressed, etc, etc.

All you can do is what you’re doing. Seeing your GP, doing CBT, informing work of what’s happening with you, trying your damnedest to deal with it.

Don’t hide just hide under your duvet, come out and talk to us. You’re amongst friends here.

Sue x

Thanks both. I can’t say how much it means just to be able to let all that out and to come to this place where there are people who will understand and not judge, so just a heartfelt thank you, really.

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Space monkey, sorry you’re having a tough time, sometime it helps to write these things down and you have, hope your GP and CBT help. sending virtual hugs x

As you have a diagnosis now of Ms you are automatically classed as disabled under the equality act so are afforded some protection from discrimination, which it sounds very much like you are suffering.

“made some recommendations for reasonable adjustments which my manager didn’t like and in the end wouldn’t agree to” again the equality act says you are entitled to those reasonable adjustments, and what is reasonable would alter on a number of considerations such as size and resources of company.Doesn’t sound like you work for a very small company so they would be expected to make sizeable, relatively expensive changes if that were appropriate. www.equalityhumanrights.com/en have a helpline you can ring for advise.Hopefully your union are up to dealing with everything but this lot can give you specific advise regarding the equality act and how to enforce if needed.

I am a big believer in fighting the bosses (*if [removed by moderator]​,contrary to popular belief not (quite)all of them are) and a few years back spent much time and effort sticking up for my wife against her twat employers,but it was very stressful so that should also be a consideration if it effects your health.

Good luck!

In your situation I would take advice from a solicitor specialising in in disability issues. As someone with m.s. you have legal protection in the workplace. A solicitor’s letter to the company director/owner gently?? advising him/her of your rights should help and the senior management should advise your manager that he isn’t doing things right. What the company don’t want is for an employee to have to resign and then sue the company for constructive dismissal i.e. putting you in a position where you feel you have no option but to resign. Keep a detailed record of all your dealings with managers, departments at your work place. Seeing a solicitor will be expensive and you have to weigh up which is most challenging - putting up with things as they are or fighting for your rights.

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There’s a free legal help service somewhere. Perhaps someone on here can find a link. It’s up to you whether you see OH or not, and they’re not allowed to disagree to reasonable adjustments. They can disagree to unreasonable adjustments.

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I realised a long time ago that you can have the best job in the world but if the people you work with aren’t on your side you might a well have the worst job. It’s a deeply disturbing and upsetting situation to be in and perfectly sums up the adage that “Hell is other people”.

I will not offer any advice; I have none. But I do understand exactly what you are feeling and how downcast you must feel by people who you once had trust, confidence and respect in.

Best wishes,

Anthony

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Thank you everyone. Some great, practical advice here, and a lot of kindness.