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they just dont understand, im not thick!

hello everyone, im having trouble recently at work (mainly), i was a twilight manager before i became very poorly in 2005 with lupus and P.T.Grief ; i almost ran the shop, loved my job, worked 12 hour days and had bundles of energy and life in me. im a mum too and kept my home beautiful, never poorly.

it took 18mths for me to get well enough to return to work part time, i was demoted back to a G.A (general assistant) and although that hurt me ive realised its best as i no longer have to deal with the big things. i work hard and know i can do the job backwards but i start my shift well but the last hour is a struggle and im literally flagging and my body is like lead.

imy job involves speaking to people/staff but my speech can go from normal to slurred and i forget things mid sentance!!! this may sound trivial but im left standing there looking stupid and incompident :(

my immediate bosses are good and dont expect me to lift pototoe sacks anymore (i cant due to joint pain) but even using a kick stool hurts my knees and hips (im 5ft) and shelving is 6ft high. i want to work, i need to work to keep a roof over our heads and food in tums etc but my body isnt working!!! GRRRR!!! i get called lazy and "come on,chop chop!" they just dont get it, i do my best my mind wants fifth gear but ive only got first gear!!! just want to cry,runaway.....all this and more besides with lupus.fed up :(

wish santa would grant my wish of a new body!!!

6 Replies

Hi Caninecrazy,

How awful and so disappointing to read your post and what unsupportive colleagues you have.

I advice you to contact Paul at Lupus Uk for him to post out literature for you to give to your employer. It's a fact sheet advising your employer and colleagues about Lupus in layman's terms. The leaftlet also provides them with further contact details should they request further information on how they can make your work environment assessible to you.

let me know how you get on,



Hugs, hugs & more hugs caninecrazy. I totally get how your speech goes haywire at the end of the day & your body feels like lead. I have found a slight increase in prednisolone has helped a lot with this. I'm currently on 7.5mg per day. I hate taking them, but I figure I could get knocked down by a bus tomorrow, so I've got to have some quality of life for now. As long as the potential side effects are kept within reason, of course. Just in case I do happen to live to be an old lady, somehow or other!

Do you take a break at work? This helps me to, even if it's just a quick cuppa & a snack to keep my energy levels up. I work very part-time, but it keeps me sane. I feel like I can step out of my lupus self for a while, even if I do fall back into her, quite literally at the end of the day. It's a struggle for me & I don't have kids, so hats off to you for being a working mum with lupus. You deserve a medal. Forget what your colleagues think, we all know you are brilliant.


I am really sorry about how you have been treated. I am not sure where you live, but in England their is a law for this, bullying and harassment have you got a union who will help you, I know it's difficult to complain.

I believe your company must try and make things easier for you but I have brain fog this am and can't think what's that's called

Hope things get better for you soon



I wonder if you could talk to them about doing shorter shifts - maybe just half a day each day - that way you could keep your hours but they are spread out more. I think the thing that daisyd is thinking of is the Disability Discrimination Act which requires employers to make 'reasonable adjustments' to help you continue in work. Good luck


I have huge sympathy for you. When I was at my worst and trying to return to my old full-time job it was a nightmare. Leaflets for your boss are useful but no one will ever really know how bad a lupus sufferer can feel when they often look fine on the outside. I remember feeling so exhausted when getting dressed that I had to lie down and rest after putting on each item. I still went out and tried to pretend I was OK. In the end you have to give your health top priority. You are a good, loyal employee and they are hard (and expensive) to find so see if your boss will adjust your work schedule to accommodate your particular problems. If you're able to take care of yourself you should find it easier to do the job. That benefits everyone. Good Luck.


i have told them basics of my symtoms,i dont like reeling off a huge list as some just stare at me with glazed eyes and have said " are you sure? u look fine to me, it must be in your head".

i work 5 hour shifts and have set "jobs" to do in that time, but with customers asking where items are etc im constantly interupted and often stay half hour over my paid time to ensure all my jobs are completed. i dont get a break as rules are 6hrs plus for a break.

i do suck on a sneeky polo when my blood sugars drop, i find it so frustrating as 5hrs feels like ive run a marathon whilst carrying a car on my head!!

i keep myself to myself and am always polite as theyre are a few gossips but thats part and parcel of every big company.

thankyou to all who replied x


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