I was dx early Feb, but had a provisional dx in Dec. I have a fantastic boss, who I kept in the loop, but she kindly kept it confidential until it was official. As I am field based, work long days and travel a lot, she then told our dept head and HR manager. I’ve alway been a ‘I’m fine…I’m copying’ kind of person, and often lying through my teeth, but since dx I have started taking my health seriously, and have been totally honest with my boss. I can often go for a week or two without seeing her (though we talk every day), and she admitted today that that worries her, as she can’t see how I’m coping. I’ve been on holiday recently and she’s contacted The MS Society and got some of the publications, but our dept head and HR lady still aren’t happy that I am well enough to work. I’ve tried explaining that I have good days and bad days, and on a really bad day I won’t be getting out of bed, let along getting in the car and putting others at risk. At the moment, apart from muscle spasticity, and fatigue related cog fog and a crazy left leg, I’m feeling really good. I understand it is really hard for them to understand, I still don’t completely understand myself.
My dept head has asked that my boss and the HR lady (who seems alright, don’t really know her) accompany me on a visit to/from my MS Nurse…I’ve only met her once, all other communication has been done by email, she is great (so far) but doesn’t really know me. I’m not sure they are going to learn a lot more by talking to her. I appreciate how fantastic and caring my company are being, and it would be a 200 mile round trip for them, but is it going to beneficial? Has anyone else had a similar situation? I’ve not asked my nurse if this is even something she would do. She has dozens of people she needs to see without having a gathering of employers with good intentions.
This is a hard one because it is laudable that your boss has tried to become informed by reading MS Soc publications……
BUT it’s all a bit smothering for me. The notion of turning up for an MS nurse appointment with my boss in tow makes me squirm. It’s like taking your mummy. This is not how it’s done.
I can appreciate that your employer wants to know but they are looking for answers that are just not there. You could be good to go for 20 years or need to pack it in next year – who knows?
As long as you are doing your job to an acceptable standard the state of your health is your own affair and you should be in the driving seat. Do you feel well enough to work? Are you doing the job properly? If so the “feelings” of the dept head and the HR lady are irrelevant.
If your company want medical information the usual route is to have your permission to contact your drs. What you describe as caring I see as overly protective (partronising) and I would be telling everyone to back off – but I can’t stand people telling me what do with ref to my MS so that tends to colour my opinion. I will be interested to see what the others think.
I suppose I have a rather unique work life. I have been with my employer for nearly 12 years (since I was 15). We had 20 staff back then, and now have over 700. My boss is the kind of person who I can have a really constructive debate with, but also have breakfast in our PJ’s together after a work night out. I’d count several of my colleagues as very good friends.
I feel well enough most days, but have had to cut down my hours (now 35-40) and travelling. I used to do the 200 mile round trip to the office twice a week, but now go once a fortnight. I work from home more and can’t manage as much time on site, and my body takes longer to recover after a week away. My boss has been giving me less to do, which makes me feel like I don’t deserve my wages. She would happily keep it at that level. I guess I need someone to reassure her to trust me, and let me find my own boundaries/capabilities. But also to explain that its not just the physical stuff/travelling I sometimes struggle with, and that spending a day on the phone can be just as taxing for me.
You are totally right, the future is very much unknown, and I spend as little time as possible thinking about it, as I can’t change it. I have explained that they can’t make me better, and they can’t make me worse. I’ve explained it is one day at a time, one year at a time, but for now I just want to be treated as normal as possible. But then does that contradict me saying I also need them to accept that some days I simply cannot do what is required, and that when I start DMD’s it make affect my ability? Maybe I should suggested she emails the nurse?
I think maybe a worded the first bit badly. I don’t think they think I’m not fit to work as such, but maybe are worried they are too concerned/not concerned enough/concerned about the wrong things. Though I’m still not sure how my nurse could help
Hi My boss looked on ms societ website when I told hhim. I am not sure about him coming to an appointment with me that woul be a bit mmuch I think. I haven’t gone bac to wwork yet since diagnosis and having to deal with occupational health currently which I find hard.
Knowing how many people on here don’t have supportive employers, it’s great that yours sound like they’re wanting to do all they can to help. My employer (an evil bank) have been fantastic with me, so I appreciate how big a blessing it is. Personally I’m not sure that it would be worth the 200 mile round trip for your boss though. If your MS nurse has only seen you once, then I’m guessing she won’t necessarily have the best picture of how you are, so presumably would only be able to answer any general questions about how MS might affect you in the future, or what they can do to help. In which case, I’d suggest asking your boss/HR department what exactly they would want to ask, and if they’d be happy to communicate via phone or email.
On a related note, I thought it would be worth mentioning something called Access to Work. It’s a DWP thing to help people with disabilities to stay in work. They can provide assessments, make recommendations of things that could help, and even pay for some things. If you google it you’ll find more about it, and you could mention it to your HR department.
Thank you for your advice. I will certainly Google Access to work. I’d like to think my HR lady is aware of this, but maybe not.
Good to hear you have a compasionate employer too, it really does make a difference.
I think I’m going to drop my nurse an email, explain the situation and ask her if she’d perhaps be happy to answer emails, or take a phone call from them. At the moment I have no need to see her at the moment so would feel it was a wasted appointment. I see her as my trump card/superhero who I only call when I need her
I’ve just had an access to work assessment. They rang back within an hour of my email request and gave me the assessment wihin a week. They were very thorough and were not looking for the cheapest option. It was totally centred on my needs. Use the MS website to help explain your symtoms. The assessor appreciated my rather extensive list of limitations and affectations. Working in a good job is great but now your health is the thing.
I just had a look at the Access To Work page. At the moment I really don’t feel I have any special requirements. I do need an automatic car, but my company pay me a vehicle allowance, which I spend how ever I see fit, so that is up to me to sort out. And if I can’t drive, they pay for me to get wherever I need to get to by train/plane, and pay for hotels if I need them. As most of my work is at least 50 miles away, I think taxi’s would be out of the question! Generally if I can’t drive, I’m not going to be able to do the rest of my job.
I think I’ll direct them to this page, and hopefully it will highlight that they really have no need to worry about me at the moment
I’m glad your assessment went well and that you are being looked after