Help Needed - Your experience in the workplace - LUPUS UK


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Help Needed - Your experience in the workplace

Paul_Howard profile image

Hi everyone,

I'm currently producing two guides. One aimed at lupus patients that want to/ are able to work and one aimed at employers. I need your help if possible.

I would like to include some quotes/stories from people who have been there and done it (so to speak). Over the next few weeks I imagine I'll need a few different stories, so would really appreciate some ongoing help.

First, I'd really like to hear from anybody that was working prior to receiving treatment for their lupus and if/how the treatment helped them over time.

Please either leave a comment below or email

Thanking you in advance.

27 Replies

Hello Paul

I have a few little stories which might work, Will give ti a little thought and get back to you later.

Paul_Howard profile image
Paul_HowardPartner in reply to Thaddeus

It would be really appreciated. Thank you.

Hi Paul

I am currently in meetings with my employers who have given me notice. I'm not sure if it will be concluded in time for you but will let you know.


Hi Paul,

In the end I was forced to resign from work after receiving treatment for Lupus. Will email my story.

Hi, I don't know if this is the type of experience you are looking for, but here it is anyway, lol.

I moved 3 years ago and took on a full time position by transferring one store to another.

Although my health was not too good I had not been fully diagnosed with Lupus.

The first year was hard going, then it reached the stage i could not cope, so I asked if I could drop a day, I was put onto a 4 day week.

Then.. Things were getting no better, and I was still struggling, so I asked if I could go to a 3 day week. Which was accepted.

I sometimes struggle, and have taken time off due to illness even though I have cut my hours.

I really enjoy being able to work, especially meeting people and helping to meet their needs.

I work in an opticians, which is exceptionally busy, it is not possible to rest or take a break, so it is hard at times.

But, my employer has been great, and has enabled me to continue.

At times I know it must be hard for the other staff when I don't make it in, as it puts everyone else under pressure to cover, I do feel awkward, but there is nothing I can do about it.

There is a company policy to phone in each day if you are ill, and we have a return to work interview, there is no sick pay, so at times money is short, BUT, I am happy to have a job,that I really enjoy, and I don't think many employers would keep me on due to the


I wish there were more employers who could enable us to work, and take into consideration the effects of Lupus.

I can't imagine being housebound day after day, asI have a lot of experience which would go to waste, I pride myself in doing my job well, and I feel extremely lucky to still be employed.


Paul_Howard profile image
Paul_HowardPartner in reply to frog

Hi Sandy,

Thank you for sharing that. I'm sure there is something we can use from this if you'd allow me?

I'll send you a private message before the end of the week.

frog profile image
frog in reply to Paul_Howard

Glad to be of help,

Here is another case, close to my heart.

My niece has just been diagnosed with connective tissue disorder, and lupus, over 18 months ago she was glowing at her wedding and in full time employment.

Unfortunately she had to be signed off of work.

It is now over a year since she was originally signed off,and is so ill the doctors have said she is likely not to work again.

She has breathing problems and is so bloated it is hard for her to walk.

Again her employers were marvelous but are unable to now to help.

She is young, always smiling, and has had her life turned round in less than two years.

She would really like to work as financial commitments don't just disappear, but not being able to now drive a car, and with very limited breathing and walking capabilities, her life has altered beyond recognition.


OK, so I was 30 and it was becoming clear that my health was failing badly, I insisted on running once a week, but this wasnt working, I had conceded that I could no longer do martial arts or swim, or rough house with my 3 young children,

My work as a panel beater was going to pot, but for now I was busking it. The company I was with folded and I joined a couple of guys down the road, they didnt know about my issues and had only known me as super fit and a bit bouncy.

Some days after work I would get to my car and sit with my face in my hands, Something had to give.

My wife was in total denial, she worked some evening leaving me with the kids. This night she went as usual and I put the kids to bed, had a bath and came down to crash out on the sofa.

I had this weird heat thing ( anyone else?) It was like the heat would build in my body, when it all met in my chest I would pretty much need to lie down and sleep. A hot bath would always speed up this process, and after drying I was feeling crushed with tireness and fell into a heavy doze.

I was woken by the phone, without thinking I got up, walked into the other room picked it up, said " Wah!" and it all went black..

My sister Nina was on the other end, she and her best friend ( Both first aiders ) hurried around with my brother ( Norwegian mountain rescue ) and his wife (nurse).

They found me ashen, still holding the phone, drooling on the carpet.

After sweet tea and an hour, I was given a good talking too,. You're ill accept it, you cannot work anymore -Take time off.

So the next day, I phoned in, fessed up about my heath issues and went back to bed.

And lying here I realised something profound. With nothing else to distract myself with, I saw clearly that; every limb, bone, joint, muscle, hair and fibre of my body -HURT.

Sod this I said, I going to work.

So after lunch I got dressed and headed in the workshop to find next to the car I was working on.

That the cheeky buggers had made me a cot complete with drip-feed and a flower in milk bottle.

And you know what? This touching display of sillyness, did me an awful lot of good.;

Martin Thaddeus.

Paul_Howard profile image
Paul_HowardPartner in reply to Thaddeus

Thanks for sharing this.

So when you went back to work, was this before you had a diagnosis or after?

Have your employers made any adjustments to your role or workplace to help you?

Would you say your employer is understanding of your lupus?

Thaddeus profile image
Thaddeus in reply to Paul_Howard

The chaps I was working with at that point were very good about it all, but they were a couple of mad brothers who split over something and nothing, I was poached by another company who were very understaning, but I coulldnt cope with working m;uch longer and stopped after a family tragedy, which left me better off financially.

I am not a good example to anyone so far as company politics is concerned, but I know how to get through working with lupus, #It was another 15 years beofre I got my proper diagnosis, between these points in time, I went through the mill and was actually daft enough to give away a kidney - despite an awful lot of test, they manages to miss my Lupus APS and sjorgrens.

Paul_Howard profile image
Paul_HowardPartner in reply to Thaddeus

Any tips you'd like to share on working with lupus?

I returned to work after the birth of my second child, which was when my health problems started, (I wasn't diasgnosed with lupus untill a number of years later), I really struggled to work and manage two small children, I had a diagnoosis of PND and eventually took voluntary redundancy. In the years between that and diagnoses I struggled with a number of part time jobs, was all a bit difficult especially with only a diagnosis of ongoing PND but with hindsight I was really quite very poorly and it was a horrible time. I hated the periods when I wasn't able to work.

A couple of years after diagnosis I had Rituximab treatment which totally worked for me and I was able to return to work, (plus my kids were older) I started out by doing voluntary work and was offered a job which I love to bits. I now work 4 days a week. They have known from the outset about my lupus, but it really wasn't an issue whilst I was doing well. Unfortunately the rituximab only worked well for a couple of years and now I am struggling. My employers, I think want to help, and try to be understanding, but it is difficult and putting practical help into place has only really been partly successfull, so pretty much I struggle every day to get through to the end of the day, but the thought of giving up my job is awfull to contemplate. I go to work many days when I shouldn't be there.

hello paul

I started work part time and my employer knew fine well that I had health issues which were controlled at the time of starting, moving office to different department and having bullyboy managers, but when the lupus went for the kidneys, it floored me. But my employer is ment to be positive with people with disabilities they have the stamps on the letters and they have disability officers and if I were to tell you that its goverment that i work for the top of the tree is supportive but further down the line a few bad apples in the fruit bowl.

Top tips;

Think of your energy as currency, spend only half of what you think you have and invest the other half in your recovery.

Keep warm, carry food on you. Chocolate is good, but some of us will have issues with mouth ulcers and thrush.

A hour of sleep before midnight is worth about 3 after, so go to bed early. When you find yourself awake at night, dont fret about it, get good quality rest, its not the same, but it is a good second.

Tell those you work with your limitations, but appear to make the effort rather than lo0oking like you are dumping your work on them, I found that I could not use the pop-rivet gun and would struggle for ages and wind up in pain with a sprained wrist, -when asking the next chap saved all the grief, and he was pleased to help.

And a nap at lunch time worked wonders and saved the risk of falling asleep while working.

I did this once, fell asleep while under a car, I was removing the bootfloor from an audi. Woke up with a blow-torch in my hand. Luckily not lit, but it was self igniting , so a squeeze of the trigger!!!!

Hello although i read this site everyday this is the first time i have commented on it, i have just recovered from having an operation to have my adonoides and a lump in my throat out, plus having all my tubes in my throat, eyes and ears flushed out right through to get rid of an infection that would not clear up and kept making me ill due to the constant infections in my throat, ear eyes and nose. i have been ill for years, but only had tests since last September, and have now been diagnosed with Lupus Fibromialgia, Connective Tissue Dissorder, and I have been coping with Severe Arthuritus of the spine, fused disc and curviture of the spine. In saying that i work 26 hours a week mon - fri, look after 3 children, and have a partner who has been on the sick for the last 2 years but since February this year has been diagnosed with a brain hernia he is now awaiting an operation on his skull/brain to help him.

So imagine how i felt this week having to have a discerplinary at work because out of 4 years at work and no matter how ill i have felt never having 1 day off work, to be told that because i had to have 10 days off for the above operation, my line manager did not think it has anything to do with my illness, even though 1 week before my meeting with her i had to sign a form which allows my employees to look into all my medical records at my doctors, and i had to talk to my employees doctor about my illness, which he backed me totally and gave my employer loads of directions that the company had to do to help me with my illness ie move my reception desk away from the front door, so instead of my desk being 20 foot from the front door on the pavement and me freezing again, move me to somewhere warmer, where the cold wont aggrivate my joints etc, My line Manager gave me a warning for being off work for more than 5 days and she said that she has decided that it would be better to apply the fact that my illness is covered by the disability act to when i really need it ie when my job is at risk but not this instance as she feels my illness does not cover it, and that was after i had to sit there infront of my line manager and another manager and explain about my illness, because they hadnt bothered to find anything out about Lupus themselves, then my female line manager making a joke that she is aching and hurting in the morning so she must have Lupus as well, I felt humiliated having to do this as i am only 46 years old, this was on friday just as i finished work, i ended up just leaving work i was so upset i didnt even sign out, as this was the first time i have ever been ill and off work with it since i started work 4 years ago, and before my op i have been extremely ill with repeated infections, being hot, being sick, body hurting, joints hurting, really feeling so ill, and chronic fatigue but i still went into work, and i have never been off ill, i am now on Tramado for pain most times 8 a day , sickness tablets, a slow release tablet a day for anxiety, and a tablet at night for fibromialgia And when i had the operation which the hospital when they removed the lump in my throat which was by my voicebox sent the biopsy away to test for throat cancer, i get a warning from work which was totally my line managers decision. Totally fed up and do not feel like going back to work tomorrow. Has anybody else been treated like this at work,

Fed up Jane

I want to work! Having been a postlady for 30 years and also have had other outdoor jobs, lupus has been an enormous shock to my system. I can no longer work outside as I also have Raynauds. For the 1st time in 33 years I am unemployed. However, in a weeks time I shall be on a computer skills course and Neal, the DEA at the jobcentre wants also to put me on a work place scheme.

Royal Mail are not very sympathetc to ill people. They have 3 sick stages. The 3rd being dismall (in my case ill health retirement, but not with a pension, as I am only 52). Even the ATOS doctor did not approve of the way RM deals with their employees. I had been off 10 months before they gave me the heaveho in August. Regards Liz

hmmm dismissal

Hi Paul,

I used to work as a health care professional in the NHS. In August 2011 I started a new role for a fixed term 12 month contract. I had not been feeling well for a while with horrible lesions appearing on my skin but so far had not needed to be off sick for a while. However, I fell very ill around the time i started my new role which was extremely bad timing. At first my new line manager, a fellow health care professional was understanding. She knew i was a good worker from my previous role and she hoped i would recover fast. However I didn't. By the time i returned to work in October 2011 our relationship had drastically changed and i felt she blamed me for being off sick.

During this time i was attending Occupational Health (OHSAS), where I gave the Dr permission to contact my dr's and consultants. I had been seen by dermatology for a year, had two incisional biopsies but no firm diagnosis. I was also asked to attend a HR meeting and it was explained that my line manager was going through the absence policy and since i had been off for more than 3 weeks i was showing up as a 'red light' and had to have this formal meeting about how to keep me at work. After this i was so stressed that i seemed to be 'getting into trouble' for my unknown illness and absence leave that i threw myself into work and kept my head down. I worked full time.

However this wasn't enough for my line manager, in Dec i had to go for a colonscopy and i was informed i would not be able to attend work the next day due to being sedated. I understood how this was recorded was at the discretion of my line manager who was being extremely difficult with me and said if i didn't attend the next day i would have to call in sick. I phoned OHSAS and spoke to the dr who was very understanding but did not have any power to do anything. I told the gastroentrologist what was going on and he issued me with a letter stating he advised i should take the next day off. When i returned to work i had to have a return to work meeting with my line manager and our relationship could even worse. Around this time i fell ill again but was too scared to say anything, i managed to keep going for 6 weeks while ill to a point i was so ill i couldn't get out of bed. i saw my GP who immediately issued me with a sick line in January 2012. By now i was also seeing a rheumatologist who was carrying out a number of tests. She started me on high dose prednisolone and i returned to work in February 2012. OHSAS recommended a phased return to work which my line manager did over 2 weeks which increased my hours very fast during those two weeks. I had also contact my union as I began to suspect that my line manger may try to dismiss me. In March i fell drastically ill and was admitted to hospital and my rheumatologist confirmed the diagnosis of SLE in a severe form. I was off sick for weeks and dreaded calling in work and speaking to my line manager as our relationship was non-existent. When i returned to work in April i had another formal HR meeting but OHSAS had put in writing at this point i would be considered under the disability act. This seems to change the attitude of my line manager and HR, who until this point were NOT supportive of me at all.

I had a long phased return to work over 6 weeks but my line manager had also relocated me to work in a surgery which was 60 miles away from my home. This long drive took 1 hr 30 mins each way which made no sense with a phased return as with the journey time i was working a full day and was exhausted when i came home. I also had two minor road track accidents as my concentration levels were suffering as well as extreme fatigue. I tried to explain to my line manager, she didn't want to know! I contacted a senior colleague who was more supportive but could not interfere with my line manager. Finally i fell so ill and the stress was tearing me apart. My rheumatologist, OT and GP signed me off longterm sick and i started undergoing methotrexate and rituximab. i was informed that my contract would not be renewed and from August 2012 i have been unemployed and receiving benefits for the first time in my life. I am still ill and needing longterm rehabilitation and physio but at least i don't have to deal with the horrible pressure and stress that the NHS put on me for a chronic unstable illness i had no control over.

Hi Paul,

This is an interesting topic for me as I have been worrying about this a lot. I work for a big University and was working for them when I was diagnosed. They are very flexible with time off etc. My immediate boss is very caring about my health. However after I had a child my health has gone downhill. I now work PT anyway because of childcare, so when I have a day sick it feels like I am hardly in the office at all. So much so that I went to see our occupational health team as I was worried about where I stood with absences. She was very helpful and wrote my work a letter to explain my condition and the treatment i was having etc etc. This letter was showed to all of the management team so if I'm not in they know there is a good reason. This really put my mind at ease, I would suggest to any other person to do this, or even write the letter yourself.

I am lucky as i get amazing sick pay here, and am protected by our occupational health team (to a certain extent - obviously if i am incapable of doing the job anymore they can't keep me), however, I now am having tests for pulmonary fibrosis and scarring of the heart, so my health is getting worse and worse. I'm only 27 years old, I worry that soon I will have to stop working, and I don't know how we will survive. I can;t even afford to pay into a pension, so money concerns me. Every day at work is a total struggle, from getting out of bed, to sitting behind a computer, running up and down stairs, wanting to fall asleep at my desk etc. I leave for work at 7.30am and get home at 6.30pm, and go to bed with my child at about 8pm every night. I literally have no life! Sometimes I get so overwhelmed with worry and stress and tiredness and pain and general feeling sorry for myself I just cry!

My work have just given me a permanent contract, which is handy (i was on a 3 year one before) so i know i am safe in terms of sick pay. I applaud all you other lupus sufferers who are able to work full time as well as looking after families. The only tips I have are going to bed early every night, snacking through the day to keep energy levels up, writing lists every day to remember what to do, i try to task any physically exerting jobs to other people, this is just recent, I was forever carrying heavy stuff around, but now I have learnt to say no.

It does make me chuckle when someone at work comes in to work with a cold and spends the whole day moaning about their sniffles!

Hi Paul

I work part time as a nurse,I have lupus, sjogrens ,raynauds ,APA,severe migraine and had a TIA in the past.The unit I work in is extremely busy and stressful at times,because of the recession we have been told we have to work harder,give more,be flexible and provide a Quality of service for less,as a result the work load has increased.The attitude is "your lucky to have a job".

A letter was sent to all staff recently ,that hospital appointments had to be taken as annual leave or time owed,also when you are out sick a letter is sent from the HR dept telling you the amount of sick leave you have taken, and at the end of every week that you are off sick you have to make contact with your manager to update them. I feel it just adds to the pressure.My line Manager is supportive,but she is under stress when it comes to getting a replacement when I am ill.I still feel their ignorance about Lupus.

When I am feeling very tired and low I am constantly giving up work,as yet I haven't but I think that's down to the support from my GP!

Hi Paul, thank you for your post,

I am still waiting for a diagnosis, but have been advised that I may not actually be given a formal diagnosis.

In 2004 I ended up in hospital and all of my blood work came back positive for Lupus and thick blood. I was however informed that it may have been a false positive and they didn't want to 'Label Me'. I was under a Rheumatologist for 12 months afterwards.

The following years I had various health complaints, but the GP's I saw did not take a holistic approach and only looked at the presenting symptoms despite me informing them that I had positive blood work in 2004.

In March this year my work colleagues and I all had a cold/flu like virus, but I was the only one that didn't recover.

I started to swell up and wherever I got pain whether it be in my head, neck, wrist or legs etc I would swell up. I carried on working despite being in pain, swelling and at times feeling extremely exhausted. I also found that each time I felt worse my rashes on my arms, thighs and body would look more angry.

In May 2012 I eventually had to take four days off work sick as the soles of my feet swelled up so much that each time I walked on them they caused internal bleeding.

I went back to undertake my usual duties and kept pestering GP's asking them to help me.

I was eventually referred to a Rheumatologist.

I saw the Rheumatologist in August 2012. She informed me that I did have a connective tissue autoimmune disorder and stated that I have probably had it all these years and that it had displayed itself in different forms including breathing problems and migraines etc.

I was placed on Plaquenil. Unfortunately at the beginning of September I had a severe reaction to the Plaquenil and ended up in hospital for a few days. I was then placed on Steroids for 5 weeks and given intensive Vitamin B treatment as my Vitamin B was depleted.

I also had CT and MRI Scan. I am still waiting for MRI results.

I was extremely exhausted following my discharge from hospital and remained off work.

I saw my Rheumy on the 26th September and was placed on methotrexate. I was told to remain off work for a further period of time to make sure I was fine on Methotraxate.

I returned to work on the 15th October 2012 after I requested fro my GP to sign me off the sick. I have had some small issues with Methotrexate, but they have not affected my ability to undertaken my duties at work. I take Methotrexate on a Friday so that I have the weekend to recover from the side effects.

I met with my manager a week before I returned to work. My manager was very supportive and arranged for me to work reduced hours for a couple of weeks. I tried to work the reduced hours but due to the demanding nature of my job I more or less worked my normal hours. I also completed some paper work whilst I was off sick.

I returned to work On the 15th October and attended a Court hearing on my return to work so my manager obviously thought that I would be capable to carry out my normal duties.

Due to my managers availability I only had my back to work interview on 15th October. My manager made me aware following my back to work interview that due to the length of time I have had off on sick leave (5 weeks) I will now be subject to Stage 2 disciplinary stages. There are only 3 stages. I am extremely upset as I am aware that following the Stage 2 meeting I would have to refrain from being unwell for 12 months following the date of the meeting not following the date of my return to work.

Due to my illness and the toxicity of the medication that I am on I don't know how I am going to be from one day to the next.

I do not even have any formal diagnosis to back up what I have wrong with me. All they are saying is that I have ? Connective Tissue Auto Immune Disorder.

Within your documentation Paul would you also use the wording Connective Tissue Auto Immune Disorder as well as Lupus as this may help me and other people in the same situation as me.

I apologise for rambling on.

Love & best wishes to you all

Anita x x x x x

Sorry Paul it should read I only had my back to work interview on the 15th November and not the 15th October as stated above. So my back to work interview actually took place a month after me being back at work. x x

I had to leave work not far into my career as Lupus attacked my brain.

I went part time first but I still couldn't manage it. I have done theraputic work and volunteer work since then but I struggle with both physical and mental work.

I cannot concentrate on anything if there is even the slightest unexpected noise.

This made working in an office almost impossible for me.

I would often have to leave the room and shut myself in the toilet to get away from the sound of telephones and people talking.

I have nothing positive to say about the effect of Lupus on my work. It is also very difficult for other people to understand.

Neverforget profile image
Neverforget in reply to Herb

Thinking of you Herb, Love & hugs xoxoxox

Dear Paul,

I would be interested in reading the guides, how can I get hold of them?

Many thanks

Paul_Howard profile image
Paul_HowardPartner in reply to Poetslunch

Hi Poetslunch. They are currently with the printers and we're expecting delivery within the next week. I will post details of how to get them on this site after they are here.

I have worked as a primary school teacher for 21 years. The only two breaks away have been maternity leave and 4 months sick leave when I had breast cancer. So I am not the type of person who takes time off work with every ache and pain. The most challenging thing for me as far as this condition is concerned (UCTD), has been trying to hold down a full time job whilst dealing with bouts of fatigue. My quandary is that I look very well, so people keep telling me, and my colleagues are puzzled as to why I have now had to drop to 4 days. I have taken a pay drop which I can ill afford so it's not as if I'm 'milking the system'. I feel that my symptoms are 'invisible' in that they do not affect my physical appearance as yet ( joint pain, fatigue, acid reflux, dry eyes, nasal and mouth ulcers). The only recent visible sign has been an occasional angry red rash on my lower legs which is possibly due to vascular involvement. I would hide this at work anyway. My employer has been good enough to allow me to change my hours but I cannot afford any further loss of pay. My condition seems to be gradually worsening and I wonder how I will manage in the future. I have been assessed by a doctor for 'fitness to work' . He was knowledgeable and understanding. He informed my employer that I am covered by the disability equality act, whatever that implies.

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