The unpredictable nature of MS makes it a very hard disease to live with, and a very hard disease to work with. Many people struggle with the decision whether or not to tell their employers. I was diagnosed at my last job (where I didn't tell them) but I told my current employers at my job interview. My previous employers were never told as there was never a time when I had any visible symptoms and MS was in a benign phase. I'm glad that I told my current employers as it would have been a difficult conversation for me to have when I started having more severe relapses that needed mobility aids and time off work.
When I first started having mobility problems it was truly relapsing/remitting and I only occasionally needed to walk with a stick. When asked in passing at meetings I'd just tell the enquirer that I was having some trouble with my legs. The mobility problems progressed to a permanent stick and then to crutches; by now it didn't come up and colleagues and co-workers just accepted the aids as part of the person.
All my co-workers know that I have MS, some other colleagues from other companies do - if we have known each other long enough and shared enough long train journeys!
There is more to it than that though. Recently (and not for the first time) a bad relapse put me in bed for a prolonged period. This meant that my job which was just reaching a critical stage had to be passed to somebody else, and for continuity of service stayed with them once I was back at work.
My job as a QS is largely office based; however, when a job goes on site so does the QS (at least once a month often fortnightly). This is where the problem arises... a person on crutches isn't really compatible with a building site - how does on climb scaffolding or even worse ladders?
Luckily my employers are accommodating and understanding. They accept that there are things that I can do and things that I can't do. The problem is that the things that I can't do change. Rather like the frog in the well for me recovering from a relapse is one step forwards and two steps back; I never quite get back to where I started.
Now even going to a meeting a back sets back my day. Walking more than about 20 yards is exhausting. Yes, I could take a taxi - but traffic in London would mean that even more time was taken out of my already stretched day.
Then there are the problems that can't been seen, the 'invisible' symptoms. The dreaded 'cognitive difficulties'. I have extremely poor memory; I deal with this using calendars and note-taking applications that synchronise between my work computer, my phone and my home computer. Worse is the 'brain fog' the moment when you can't find a word, whether it is in the middle of writing a report (annoying and delaying) or a conversation or meeting (embarrassing). There is the difficulty in maintaining concentration. At home this is irritating (especially for the Better-half) but is also a bit of a long running joke. At work it can be insurmountable and it just means that some days are not as productive as they could and should be.
Then there are the problems that people don't like to talk about. Difficulties with bladder or bowels. I have all sorts of bladder problems; exacerbated at work by the fact that the ladies toilets are one floor down. I've had different problems over the years, the current is extremely annoying - I'll not think about going to the toilet all day; but as soon as I do I'll realise I need to, desperately. Wait for the lift or wobble down the stairs - it is a toilet dash. Not too bad in your own office, but worse if you're at a meeting and don't know where the facilities are or out on site where there are only one set of facilities!
I'm lucky though. Everything that MS throws at me I manage to deal with or live with. It means that I can keep working in a job that I enjoy (most days).
