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Lack of understanding

I dont even know where to begin trying to explain this......

I work full time which is at times a massive struggle, I've been open and honest with my managers and colleagues about my illnesses. I've had a shocking year health wise, I've dislocated my hip and shoulder, had a minor stroke and a blood clot, had my 8th miscarriage and been told I can't have children and to top it off had a massive flare which lasted for months, at one point my family were asked to make an end of life plan as I wasnt expected to live.

All pretty serious stuff. Work have been so unsupportive its unbelievable, over 5 months I had 2 phone calls from them, one asking when I was expecting to return and one asking which company we use to fix the dishwasher!!

I've returned to work now, I still have an awful lot of pain and fatigue but I'm getting on with it. Not once have my managers asked how I am doinig.

Another girl in work had had a cyst removed from her ovary this week, theyve phoned her every day to see how she is, they visited her in hospital, theyve sent a card and flowers and all they can talk about is how awful it must be for her.

I know that it isnt a pleasant operation and I do feel sorry for her and I do hope she is ok but I just feel so bloody angry that she is getting so well supported when I have had absolutely nothing. I nearly died and had such a hard time but they just dont seem to care.

What I'm most angry about though is that I had such a great relationship with my management, we were such a good team and through all of the bad times and struggles I've stood by my managers side, i've defended her, believed in her and fought her corner. I feel so used and angry.

6 Replies

I find it's because with lupus, u don't 'look' ill & sometimes it can happen so regularly, people get used 2 it & kind of 'desensitised' 2 it. I worked 4 the NHS 4 14 years with no probs then a flare kicked in 2 years ago & bang, I was off work from day 1, until we mutually agreed 2 terminate my contract just over a year later. My managers were ringing all the time etc but they were only doing what they were instructed 2 do by HR. Occ Health & my Consultant both wrote 2 HR & told them 2 back off & stop hassling me as there was no way of telling how long the flare was gonna last & the the added stress of going on at me was just making things worse. In all fairness, they DID back off but I totally understand where u're coming from, it's kind of like 'If u're face fits' in a lot of places. I really feel 4 u love. Maybe it'd b worth sitting down & having a discussion with u're managers & just say that u don't feel very supported?


I'm sorry to hear you had to endure such a horrible year of life-threatening health problems, and that your work colleagues are not so understanding. There's nothing worse than being mis-understood, it's infuriating. And don't they realise you nearly died??! I find Lupus is such an enigma to people they just don't 'get' it. I've taken to just explaining over and over to people now, this seems to be the only way to raise awareness and help people overcome their blind spot. It's helped me -I can see now that they just didn't 'get ' it before, then when I explain how lupus effects me, I see the penny drop for them, and they start to understand a bit. Hope things improve for you both at work and in your health. xx


...and I don't explain about lupus in a moany kind of way, I just say it very matter of fact. I think that helps them listen better.


Totally agree with u on that 1 Dryad ;0)


Thanks for your comments. I think you're right they just dont get it. I think some of it is also my problem, even though i've been open and honest by explaining everything as it is invisible most of the time people dont actually know how I feel unless I explain it and the last thing I would want is to come across as moany and needy, so I maybe dont go into as much detail on a day to day basis as I should, but I also think it shows such a lack of consideration on their part... I dont know, I just fancied a moan!!!



Moan away my lovely, I'm sure it helps ;0) x


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