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Going back to work after being diagnosed

This is my 1st post so I’m not even sure I’m doing it right.

I’m due back at work in a few weeks time and its fair to say I’m bricking it. Lots of questions going round in my head. How will it pan out? Will I be able to cope? How do I tell everyone when I struggle to say 2 letters…MS?

Does anyone have any advice?

Hi Jem,

Sorry you’ve had to join this site, but it is the place to be for support.

Sounds like you’re having a rough time if you’ve been off work.

It will always be difficult telling people. I took 12 years to tell friends and work as luckily my MS progression was very slow.

This site has lots of leaflets you can download look in the care and support section

Work and MS an employees guide for you.

Ms in the workplace - guide for employers.

Thanks Jem, haven’t looked at the care and support for ages. There are quite a few that will be useful for me to read.

Keep well and good luck with your return to work, can you do phased return to work? That might be easier.

Jen

Hi, I am not sure what advice I can give, but I was in your position last year after taking substantial sick leave. I went back to work on a “phasing in” period after a substantial relapse. I worked from home until I could manage commuting to the office. It took some time, but I have been really fortunate with having a supportive workplace and colleagues. I had a couple of Occupational Health interviews along the way. They were actually very good and the doctors performing them had lots of helpful advice not only for me, but my line manager. I told a small group of colleagues about my MS, but it is up to you whether you tell anyone or not. This is your MS and I found there to be lots of helpful information about work on both the MS Society and MS Trust website. I still find commuting hard and on the two days I do go in (I work one day at home) I am exhausted on my return. My husband has to be home to look after the children as the most I can manage is travelling to my sofa! However, it does work for us and I feel returning to work has been a positive thing for me - but everyone is different. I do hope to continue for as long as I can. I am currently starting DMDs (Tecfidera) and work have enabled me to work from home until I feel I can commute again. I am sure different people will have had different experiences, some good, some bad. However, I do hope your work are supportive and you feel comfortable about going back. All the best and take your time. I was diagnosed July 2018 and I am still adjusting. S

Hi Jem Don’t worry so much… what will be will be and you may be surprised. When I went back to work and told my boss and colleagues there were so many tears and not one of them mine. Work have been supportive and people generally understand that you just need a bit more help. My advice to you is be honest and approachable about your condition. I’ve found that it’s helpful for people to be able to ask me their questions rather than surmise an ill informed conclusion. Tell them if it’s a bad day and you’re struggling and I always try my hardest to be a useful part of the team (more on good days) ha!! You will cut your own shape in your role and if amendments need to be made make them. Take some pressure off yourself and be proud !! Take each day at a time and I have to remember although I’m not particularly disabled I am at a disadvantage so I give myself the best chance of succeeding by making little changes that have to be honest taken time to work out. Prepare yourself for stupid comments and poorly asked questions I’m afraid that comes with it but more often than not no offence is meant it is purely not knowing. In the event you do have someone less than understanding on the team just file them and their opinions in your spam file. My spam file is at capacity most days such are humans. Best of luck lovely and you will be fine Xx

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Hello Jem

I worked post diagnosis for quite a few years. I told my boss, my HR department and my team. I didn’t bother telling people I didn’t work directly with, or my clients (I did a fair amount of consultancy work).

In general my team were fabulous. I remember one day having a meeting with a client and finding walking hard that day, one of my lovely colleagues just hailed a black cab so we could get back to the office in central London without using the tube (and he paid for it too!).

There was one fellow workmate (who knew I had MS) who wanted to walk up 3 flights of stairs one day instead of using the lift. He tried telling me ‘you need to keep using your legs!’ I told him, ‘no bloody way, I’ll decide what’s best for my legs, and today it’s the lift!’

I suggest you tell the people you need to and want to. Otherwise, keep it to yourself if that makes it easier on you.

Best of luck (and welcome to the forum.)

Sue

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Thank you everyone, I was diagnosed November 2018 so still quite new to me and sometimes I ask myself “Why me?” but most of the time I try to keep positive. I’ve been off work since October last year and I know I have to at least try to go back, it can only go 2 ways can’t it? I had an Occupational Health appointment this week and think I had a bit of a wobble when he said I was fit for work…I probably am but apart from Maternity Leave, I’ve never had this much time off work, I’m never usually ill. That’s why I am so worried about going back. Some of work close work friends already know and I know the others are worried about me. I think I’ll be honest and tell them, as and when I can. Thanks for your advice, hopefully everything will be fine.

Well, today’s the day - I’m going into work this afternoon for a meeting with my managers about going back to work. I do feel a bit nervous and sick but I suppose it’s got to be done. Lets hope they are kind to me.

Good luck hope the day goes well for you. You over think things and it’s not as bad as you thought it was going to be. Kay

Good luck Jem69. I remember how hard it felt going back, before I went back. But (in my case) it wasn’t anywhere near as bad as I had built it up in my head to be.xx

Well, it wasn’t as bad as I thought but the reality has now hit me…I’m back to work on Monday!!! Phased return, just 3 mornings to start with and reviewed weekly. All I can do is try and see how it goes. Thanks for all your support