Last reply 1 year ago

I’m just going to warn everyone in advance that this is a rant coming up, I’m also pretty sure I’ve ranted about this / or very similar before.
Why am I so mad?

1. So I’d just started to feel like my career was taking off after many years, thanks to the financial crash- unable to find decent interesting work when I graduated and also unsure what I wanted to do/be. Now, diagnosed, unable to do that work. I’m only 29.
2. My employers are beyond amazing and sympathetic to my situation. They’ve allowed me to start working completely flexibly from home – even if I don’t NEED to be away from the office.
3. I have no reason to be mad/sad about this.
4. I’ve managed to get rid of all the parts of my job/ responsibilities I hated to someone else who started after me. Win!
5. I’ve ended up with the best parts of my job with flexibility to work from home.
6. I’m still mad becauseI feel like a failure unable to work 5 days a week from the office.
7. I feel like my value as an employee has hit rock bottom.
8. I feel like all other employees see me as an inept charity case/ privileged girl pretending there’s something wrong with her.
9. I don’t feel there will ever be any further chance to progress my career.
Also mad that I seem to care so much about my career!
10. and mad that other people are in far worse situations and deal with it with grace… I’m certainly throwing my emotional toys out of the pram!

How do I accept these new realities and limitations 2 years on?

Will I ever feel happy with these limitations again? I almost feel like I’d be happier if people could see a reason for them- no one understands fatigue even if they are sympathetic.

Feel like I should only moan once I’m in a much darker place really!

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1 year ago

OMG! I really can relate to your situation. Maybe I can’t add any good advice just understanding. Fellow employees attitudes to change can really suck most times, instead of them seeing working from home or job sharing as an innovative way to achieve the same if not better result! Most employees choose a negative approach. The future of inclusive disability friendly workplaces will surely need to embrace working from home as a equal contribution or face discrimination charges?
I had a situation where I went from a large corporation to join a small company, with the idea of building the small company up to compete with larger firms. It all went very well growing from our original group of 3 to 14 in a very short amount of time. Then my plans had to change because of my worsening MS symptoms (SPMS).
Long story short my Boss was more than happy with my performance but when it came time for other employees to step up and do what their job required them do? They actually started to resent ME for it, I eventually decided to leave work with a TPD payout.

Looking back on it all now, Communication was the thing was missing in my situation and I probably would still be at that workplace today.
I had a great relationship with my ex boss and I told him everything about my MS and he was and still is a great support to me. I should have shared a little bit more with my fellow employees (within reason) because now they know what I was capable of managing a business while dealing with my health issues they are full of admiration and still keep in touch with me 5 years after my leaving.


Thanks for posting your comments. Its obvious you hold a high bar for yourself and what others think about you. In my family we have had some similar thoughts and its mostly around what other people might think. My advice to my wife to “simply not care” isnt actually something she can do. She just does care. I have suggested leading the way helps set the stage for others that might follow in the same type of path in the future. Anyway, adjusting to a new way of living life seems to take time. Sorry this isnt super helpful most likely, but I undestand where you are coming from and appreciate your thoughts.

1 year ago

I didn’t start dealing with the negativity for several years after diagnosis. It’s an awful thing to say, but the time came when I saw people around me starting to get medical conditions! There was a heart attack case at work ( a life and death emergency, in fact), two colleagues dxd with diabetes and someone else off for months with what was eventually dxd as severe epilepsy. Instead of being the only person living in a parallel universe, I began to feel part of that crowd! It did change the workplace culture slightly – lots of conversations about how work was all very well but…….(you can imagine the conversations) I don’t have any answers regarding your feelings of loss, because I had worked for nearly thirty years before the MS. I do know, though, that your thought processes are entirely to be expected, because my doctor told me exactly that. I have surprised myself by finding entirely different things to fill my days now I no longer go to work. Work was all-consuming and I really thought that it ticked all the ‘need’ boxes in my life because it was stimulating, demanding and slightly unpredictable. I’ve re-invented myself, which is all the more pleasing because I never thought I could. Hopefully, you’ll be able at some stage to consider your own talents and personality in a wider context than the work ‘groove’. Very best wishes, keep strong, xx

1 year ago

Thanks all for your comments. Good to know that I’m not being selfish and unreasonable to feel this way! Thank you!

1 year ago

I’m right there with you and you’ve actually articulated a lot of what I try to say to my husband but can’t find the right words to make him understand. I have a great job, a supportive boss who understands about MS. If I asked for accommodation I know I would get it (we’re in the employment law field, so that’s really a no brainer). But I feel like I shouldn’t ask, and yet I also feel like I’m in a downward spiral. My brain doesn’t work as well as it did when I got this job 13 years ago. I’m making stupid mistakes all over the place. It’s high stress. But I say nothing, I just do the best I can do but all the while I wonder how much longer I can keep doing this and then feeling stupid about it, knowing others are far worse off than I am so I shouldn’t complain, and on & on. I don’t think my co-workers understand how MS affects me. My boss does, so that’s something, but not quite enough.

So I get it. You’re not alone! I don’t know if you’ll ever feel happy with the limitations… maybe someday? I hope that someday soon I can work somewhere else in a job that isn’t as busy/stressful as this one, and then I don’t have to worry so much about all this.

1 year ago

Hi beccamc99

I totally undrerstand you. I think we all have been there. It is so difficult at this point to see clear… it really takes time to settle your mind and find the next step (2 years it took me to accept all this s…) My ms was bearable for the first 4 years and then i could not hide it any more. I had to stop working they basically would no accomodate my disability and offered a good pay out which i took. This happened 2 1/2 years ago and now i am soooooo much happier! I am a lucky one because husband works…… At the time it was a difficult decision, all my life studying and working and then stopped all of it. All those years investing for a good future…… but now on reflextion i see everybody with their busy lives, everybody is so busy, it makes me enjoy every single little thing now and i see how fortunate i am…..

You will find the right path and you will feel much happier, promise!!!! It is TIME what you really need ….don’t worry so much about work enjoy life!! You are on the best drug out there, you have done the best you can with regard to medication, ms will carry on but you must enjoy the now and forget about work, dont let it consume your brain…. it really does not mean anything …..I know it is difficult ……if you can still work oh man! I would go to walk on a beach , i would go camping, i would take a break in a city for a weekend just a bit of plan and go! I would walk on the streets holding hand with parner husband children…. i would walk to places and drive a car!!!!! So many things…..

Take care xxx

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