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.