What to say..or what not work?

I’m self employed and do quite a bit of social networking. I recently put up a message on a forum that I use for work and had to stop myself suddenly from writing anything about being less than well recently. I realised that commenting on it did not help convey what I needed in that situation. It wasn’t just unnecessary, it actually sounded like an excuse. So I didn’t say anything and kept to Positive Professional mode. Before diagnosis, did or do you mention what you are going through in your work environment? Do you keep quiet or not? Have you ever said something then regretted it? After all, we here in limboland can’t give MS as a reason ( nor an excuse - not that it is). I felt that if I had said something, my business would have been unecessarily affected, reliability would have been questioned where there is perhaps, no need, and I would have been ‘giving away my power’. What do you think?

I have kept totally quiet but that includes my family etc and is just my way. Ax

As an underwriter I deal with insurance brokers all the time and I have a very good relationship with one of them. I had numerous conversations with them, not only about work but conversations about small things like the broker saying “bet you can’t wait to have a bottle of wine tonight after the pressure we’ve put you under” my response being that I don’t really drink much. As I am only 34 they wondered why and it got to the point where I couldn’t not tell them about the possibility of a MS diagnosis. However they have been fantastic about it, they knew I was off on the 23rd/24th January and the appointment at neuro was the 23rd so they phoned first thing on the 25th to see how I’d got on. I had to tell them that I had s**t out on luck and that I did get the MS diagnosis. Their response to this was “well just let us know if there is anything we can do to help”. I have never met them but they have been brilliant. With regard to telling work I told them quite early in the diagnosis process as I knew my manager would be OK with this, again they have been really supportive, I can work from home if I need to and they have made adjustments at work with regard to working times. It is your decision though as not everyone is as understanding.

I have no firm dx but have told my boss some of what is going on. Bit hard to pretend all is fine with the world when I the mobility issues etc are there for all to see. He has been brilliant and asked if I need anything to make my life easier. We are in the process of moving to much larger premises so said very tongue in cheek I might be needing a mobility scooter to get round and he said fine. I know I am very lucky and not everyone would be met with the same understanding I guess it is just a case of assessing the situation and deciding which way to jump. It’s a small world and I would rather my boss heard it from me than second or third hand chinese whisper style. Of course everyone’s situation is very individual to them and once an issue such as MS is disclosed it cannot be undisclosed so it is no easy matter deciding which way to go. Good luck Reikki in your decision making.

I think being self-employed is slightly different, as it may deter custom if there’s only you to do the work, and word gets out that you are not so well. Then again, it depends on the nature of the work. I’m only guessing by your name (though you might have mentioned it before), but if you are some kind of holistic practitioner, it wouldn’t bother me at all - as long as you are well enough to see the client on the day, there are not targets, deadlines etc. that anyone would be worried about you not meeting.

However, I am looking at retraining as a freelance proofreader/editor. With publishing, there ARE deadlines, so I’d be reluctant to admit to anyone in the professional sphere that I wasn’t well, in case it discouraged business. They might think: “She’s not well, it’s too much of a gamble - she might leave us in the lurch.” The same if it was, say, catering. I’m not sure I’d book a caterer for an event, if I knew she wasn’t well, and might get worse at approximately zero notice! I’d be half-expecting a call to say she’s had a relapse, and can’t do it! Of course, it would be different if it was a catering company, and I knew I wasn’t relying on just one person.

I was employed (not self-employed) during the diagnostic process, and yes, I did tell them. For a start, it was obvious something was up, as I kept having hospital appointments. I thought, if I said nothing, it would fuel speculation about what it might be, so I wanted to keep in control of the story, rather than have the rumour-mill working overtime (“It’s cancer”, “She’s dying”, or even: “She’s pregnant!” etc.)

I was also conscious my work may be affected by that point (not just symptoms, but all the worry and distraction), so I thought it better to be honest, and admit there was a health issue, than to be thought a shirker, or even to have a drug or alcohol problem.

I didn’t mention MS was a suspect until scans had already found lesions, and I’d been told it was on-the-cards. Prior to that, I told work - honestly - that I was being investigated for a suspected slipped-disk, as that was all my doctor believed it was. She’d told me it was most unlikely to be anything sinister. Depends what you mean by “sinister”, I suppose: malignant, no, but I think MS is still pretty sinister.

When I was diagnosed, I told one customer, whom I got on with very well. I used to travel about three hours each way to visit her, on public transport. When I knew (and my boss knew) I was ill, these visits tapered off, and I preferred to conduct business by phone, wherever possible. But because I liked my customer, I didn’t want her to think I was avoiding her, so I let her know the reduced face-to-face contact was because I was ill, and finding the journey difficult - not for any other reason.

I didn’t tell other customers I was less pally with. Although I nearly blurted it out, on one occasion: I had one particularly difficult and belligerent customer. The week I was diagnosed (I had no time off over it at all) I made a minor mistake. He’d told me X had been replaced by Y, and please send a report to Y in future - I forgot, and still sent it to X. This was nothing earth-shattering, as X was not somebody who was no longer allowed to see it, and it was a simple matter to resend it to the right person. But the customer started barking at me, as if I’d done it on purpose, and snapped: “Have you got a problem, OR WHAT?” I was soooo close to retorting: “Oh yes, I HAVE got a problem. You can’t begin to imagine! I was diagnosed with MS this week, so forgive me that a minor amendment to your mailing list was not top of my mind!” Fortunately, or perhaps unfortunately, I did not say this, leaving him to assume I was just thick. Perhaps if I’d said something, he might have realised how inappropriate his rantings were, when he has no idea about the person’s circumstances, or what they might be having to cope with. If it had been some major screw-up that had cost his company thousands, I could understand it, but to make such a scene over a misdirected e-mail, that hadn’t caused anyone any harm (there’d been no confidentiality breach, or anything like that - it was just a minor inconvenience).



Thankyou, Rufus and Dinks for your replies. I am so glad you are both getting the support you deserve! My situation is a little different. It’s very early days for me yet - I’ve only just got onto a neurologist’s waiting list and have no idea when my appointment will be. My GP mentioned the possibility of ME (and now I understand that it has many similarities with MS). How does this affect my work? Well, I’ve two strings to my bow and for both I’m self-employed, working from home. I’m still working on getting both off the ground and now my little one is starting primary school, I’m looking forward to having much more time to put into them. On the one hand, I have a holistic therapy practice, on the other, an online shop in which I sell my own creations. So yes, I’m at that stage where I’m facing the ‘what if’ questions and yet doing my best to take each day as it comes. My main problems at this point in time are dizziness and fatigue. Most of my symptoms are quite invisible. Yes, I’m forgetful and mixing up words occasionally. I suppose I’m worried about letting people down. The therapy practice is very very slow as I’ve not had the time or funds to advertise it yet, so people find me through word of mouth or an organisation I belong to. With the shop, I sell within an online marketplace and know that I have a highly supportive community there should I need them and have mentioned to one close colleague turned good friend that something is going on that is affecting my productivity (all the harder anyway when I’m also on mummy duty!) I suppose I’ll have to learn to flow with things and handle each situation as it comes up. I’m reluctant to say anything ‘official’ just yet, or alter delivery times on my shop, for instance. I like to know what to expect. This experience is quite a challenge and I have great respect for those dealing with unpredictable health issues daily. Now, somebody give me a loving kick up the backside so I can get on and do what needs to be done!

Kick :wink: Xxxxxx

Pmd you Xx

Thanks Tina, thank goodness that was a minor blooper and quite understandable in those circumstances. Yes, I suppose one of my worries is the cognitive issues. I have to be highly organised and must admit that the finances side of things is not my strong point. I’ve struggled with forgetting to pay domestic bills and am getting into the habit of writing things down as and when I think of them on my calendar. At the moment though I’m really grateful to be working from home after years of going out to work. I’m doing what I really love. I’ve met people that really understand me for who I am. I can use my therapy for my own benefit and distract myself from my health worries with my craft. When I can cajole myself into sitting down to do it (apart from the fatigue, I’ve been having dizziness when looking down at what I’m doing sometimes). Thanks for reading! Words are jyst pouring out right now, my way of coping, I think.

Hehe thanks Arwen :slight_smile:

Reiki. Although the docs mentioned ME and it does have some similarities I was diagnosed with it when I was at uni and it was a last ditch diagnosis when all other tests came back clear. There are some similarities so it can’t be discounted but I definitely feel different now than I did when they told me I had had ME. (Took two years for then to dx and then told me I was getting better so no need to be seen again) I’d say with your work I don’t think it would affect your business much if you did say anything as I’m sure you’ve got a good customer base to keep you going Hugs Mick

Thanks for that Mick. I’ll probably wait until I get a diagnosis to say anything, unless it becomes unavoidable. Interesting about your ME diagnosis. How exactly do you feel different?

I have to say I had a totally negative experience with my employer! In public they are an institution that professes very loudly to be a caring, pro equal opps employer - so it came as quite a shock to me!

I had worked for them for 7 years then had a relapse last year and was kept off work by the docs for 4 months - despite being really bad during the whole sick leave I actually worked all the way through - not in the office granted - but from my bed or my sofa!

Unfortunately as soon as a ‘probable MS’ diagnosis was mentioned - they made me redundant - while I was still on phased return! It literally took them just 2 weeks from the first mention of redundancy to me being thrown on the scrapheap! Basically they got rid of me before that definite diagnosis was made as they were worried I would be a liability.

I still work for them but now on a self employed basis. What they did was totally illegal - but I have had no choice but to accept it and get on with things.

Sorry guys - I don’t want to be negative - but from my personal experience I would be very careful what you say/do where work is concerned xxxjenxxx

Reiki, I was struggling fatigue wise bit didn’t experience a lot of the other symptoms related to ms an other illnesses (creepy crawly sensations, numbness, dizziness) Mick

PS I should say my immediate boss knew I was struggling healthwise for quite a while - they were awesome & ‘protected’ me for a long time - i.e. flexible working when I was ill or for hospital appointments etc but the problem was with the person highest up in the personnel dept xxx