I hope you all are doing good during this days, I wanted to ask if any of you have ever had to think seriously about getting a new job because of your health issues? I am doing my best to stay at mine as so far it has paid me well for my work although it is extremely demanding since it is construction work. I have to drive around 3+ hours to go and come every day and sometimes I do 70 floors up the stairs and over 12,000 steps during a day which makes me feel completely exhausted.
I do exercises, I have a healthy diet rich in vegetables, fruits, water, I sleep at least 8 hours a day but this routine is definitely affecting me more and more everyday to the point of feeling depressed, anxious and stressed. I am wishing to find another job near home where I can earn my living and have a good healthy life, does anyone know where to look for a job for people with SLE? Does any of you are having the same situation?
I wish you luck and the best for you all.
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Da_vinci
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Hi Da Vinci. This is an extremely challenging question. How does lupus affect you? Do you work 40 hours a week? Less? Do you have other interests to turn into a job?
Lupus may behave better of course as you are taking care of yourself except for the fact that lupus could care flying rainbows how well you eat and drink if you don’t feed the beast and sleep when you need to sleep. Exhaustion will hurt all the other good things you do for yourself. Your work sounds very tough for Lupus. To be honest, I could not work with my SLE. I’m in my late 60s now. But even in my 40s before diagnosis and kids left for college I just wanted a nest to hide in by about noon every day. Are you willing to cut pay? Work half time? Work from home? Hopefully someone who has walked your shoes will jump in. I’m sorry this is happening to you. Especially if you liked your work. All the best, MM
Hi, thanks for your reply and for sharing your experience, I really appreciate that.
I work 40 hours a week, plus drive to work and home around 3 hours a day (without traffic) I wake up every day at 5 am to drive to London to work, traffic and driving stress me out a lot lately and dealing with rude people at work does not help me.
The way Lupus affects me is unpredictable, I used to have more good days than bad ones but everything changed for me after I got appendicitis, after the surgery I started feeling more tired, achey, stressed and depressed… sometimes when I drive to work around 5:30 am I start crying, praying for a new opportunity to find, for a new job where I can feel more comfortable and be close home.
when you said “a nest to hide” that is exactly what I need after a day of work, sometimes I just want to be home… just that.
I feel like I’m living my life at the limit, like I am pushing myself every day to complete my tasks at work.
I am 44 years old and feeling this way, this makes me think seriously about what I am going to do for a living without compromising my health.
I have been afraid to look for options that involve a half time job or a cut pay since I’m the one who have the best income at home, this is why sometimes it’s hard to make a decision about this, although it is reaching a point where I may have to as my health is getting affected by this routine.
I thank you for your kind words and your time, I wish you the best. May god bless you.
I’m a sorry to hear how your job is affecting you. Have you spoken to your employer and asked for reasonable adjustments? Also have you applied to Access to Work to see if they can fund any adaptions to help you?
I have SLE and I work 4 days per week in a sedentary job which is more mentally taxing but even that makes me feel so ill and I spend the other 3 days recovering. I cannot imagine how hard it is to work a job like yours with that amount of hours, physical labour and driving. Driving triggers my symptoms as the UV seems to be worse for me in the car 🤷🏻♀️
Have you looked at home based jobs or hybrid jobs?
I have a returning to work meeting today with my boss as I couldn’t go to work the last three days, my situation is a bit different as the work I have to do is physical, and driving to work that much drains me a lot. I know that is the only work this company has to offer me so I am afraid that I may have to take it as best I can or leave it and look for another job that suits me better.
Even though I follow a good diet and exercise routine I feel that the stress this situation is causing me is killing all that good things, to me stress and UV light are the triggers for symptoms.
I will see how this meeting goes and based on it I may have to make a decision about what I should do.
Working in a building site in London where people wants everything to be done for yesterday, the lack of manners and respect from people and managers is definitely something I do not want to be dealing with anymore.
Sounds really tough for you. What is your sick pay like? Would it be worth taking king term sick to recover if your employer pays sick pay for long enough? Is there an option to apply for ill health retirement?
I really do not know how to have access to one of these options, at the moment the sick pay is not the best but it does help.
The company I work for asks for a sick note to pay sick pay but when I went to the GP two days ago, even though I said I have SLE and I am not feeling well to attend work the nurse just prescribed me with pain killers and did not gave me any sick note (I didn’t asked either as I thought it was obvious) so I felt pressured to go back to work regardless how I feel.
I have not heard about ill health retirement, but I will look into it.
You have to learn to advocate for yourself as I have found in my experience very few people without SLE understand so you have to go prepared with notes or bullet points so you don’t forget things and also be more assertive/clear about what you need. It’s hard to do but it’s so important or people will just keep assuming you are fine
I think people that have never experience the disease or met someone with it before will never understand that. It’s only us and our close ones that will know what it’s like. This really sadness me as I don’t think there is ever enough done for us. I mean not enough support groups, help for gp, help from universal credit, help from work and even understanding from others like you say. I hope you will sort something out. Much love x
Hi, I thank you for your words and your kindness 🤗
it is true that it feel frustrating not to be understood, I get a lot of people saying that I look fine, that I need to change medication for going 💯 natural, that everything is in my mind and is psychological or people saying that I am a strong man and I have to deal with it… I have been called a freak/weirdo just because I had a breakdown and started crying… which only makes me isolate from people and not wanting to talk or socially anymore.
I have become very selective about to whom to talk to and share time with since not every one understands the way we feel.
It is sad there’s not much support for people dealing with SLE. I found extremely frustrating when I have to go to the GP and the nurse looks at me like if I am lying or faking, it happens ones where a nurse started telling me that I was there just to get a sick note that I was wasting her time and it was not until she calls the doctor by phone to complain about my “normal” looking condition when I asked her to tell the doctor about my SLE condition, that I have Lupus nephritis and I have Hypertension and asked her to check my blood pressure. For her surprise, my blood pressure was high, the doctor ask her to send me for a ECG and to write a blood pressure diary and yet she didn’t apologise to me, I did it instead and I don’t know why?
I wrote a complaint letter to the GP I let them know everything as she definitely makes me feel lot worse than I was and I asked them to please never send me again to her as she was not only rude for a nurse but she has not got a clue what SLE was like.
GPs nurses should be trained and informed about chronic illness like SLE and how it affects people in many different ways.
I completely agree with you and that’s so relatable what you’re saying. If you want to add my socials somewhere then I’m happy to do so if you ever want a chat or need to vent to someone I’m more than happy
Hello Da Vinci, I'm really sorry to hear how your SLE is affecting you. I used to do long 12 hour shifts including days & nights. I really struggled doing my work due to having regular flares of my SLE. At the end of my shifts I couldn't even walk because of painful swollen joints & also suffered with fatigue and difficulty sleeping. My Rheumatologist advised me to speak to occupational health at work. They were able to write recommendations to my manager and my shift pattern was changed to doing just alternate day shifts, giving me a day to rest & recover between shifts. I found this really helped me cope better with work & I had less flares of my SLE. It must be challenging for you doing construction work which is physically tasking on your body. And having to do those long hours. I don't know if you have occupational health or you can speak to your employer to see if they can support you? Or think of getting work closer to where you live to cut down on the travelling hours?
I really feel for you and hope you can find a solution that works for you. Very best wishes.
Hello, I hope you are doing well, thank you for replying and sharing your experience it comes handy to know about different experiences and how they affect people with SLE.
At this point I think that I definitely need to work closer home, I need to avoid being stressed and moreover being under pressure.
I have a “returning to work” video meeting today with my employer as I said I would be back to work today. The truth is that I am not sure if I can keep driving that much every day and keep everyone happy but me. It is turning into something that makes me feel stressed and depressed.
Hi, I am a bachelor in science (1997) graduated in a Caribbean country, I did an automotive mechanical engineering apprenticeship (2002), I am a native speaker of Spanish and also have a good understanding of Italian language.
Since I came to the UK 🇬🇧 I have done courses related to construction as it was the trade that was more reachable for me as to start.
Hi Da Vinci, You obviously have good qualifications already but thinking about a possible sideways step I know examples of two men, in their 30s, who do the following -
First one - injured his knees playing cricket and became less agile after operations, so he went from being a carpenter to now leading the groundwork crew by training to drive/operate all the vehicles on site, eg excavators, diggers etc. He works in an air conditioned cab, sitting down obviously, with quiet music in the background and is a valued member of the building company he works for. Just occasionally he gets involved in more physical work but that's not ann everyday occurrence.
Second one - retrained as a building site health and safety adviser. His job involves some travel in a company car and when he goes onto site he's inspecting, advising, judging all aspects of safety for those working there. He needs to be able to move around the sites but generally a much less demanding job physically.
So there are other pathways but you'd probably have to retrain and only you can know or find out if that's possible. Good luck to you.
Even 10 years before diagnosis in my mid 30s I was finding that I could only do part time work. Now I'm in my 50s and work at home but only about an hour or two a day as that is all I can manage. Unfortunately it seems the older you get the less you can do as your body begins to break down with older age. I get up about 8 and then by 1pm I have had it and have to rest for about 2 or three hours. I loved that nest illustration as that is how it feels. If I rest that long I can carry on until about 7 or 8pm then its shut down time. The more you push your body the more it will fight you back and the more fatigued and ill you will be. It's an awful situation but with our condition you can't expect more sometimes than light work of just a few hours a day. I stay fairly stable but I know it won't be long before I get to the point of not being able to work at all because of fatigue, eye issues, joint pain. It's the curse of this condition. You become 70 at 40 and 80 at 50. So sorry for you but you need to think of an exit strategy before you become a lot worse and your health suffers big time. Facing up to what's happening and putting plans in place before they are needed keeps the stress down a lot. Maybe not what you want to hear but I'm a realist and I have seen others around struggle on in work and get sicker and sicker, for me it's not worth it but I understand financial pressures may keep pushing you into unrealistic work patterns for you now.
Hi, thank you for sharing this with me, I do appreciate it 🙏🏻
Since I have been diagnosed with SLE I have a period of time where I feel unwell when working hard, is around this time, the hottest time of year where I feel like I struggle in any way.
this time I stared having headache at the back of my head that feels like a pressure pushing to my ears which makes my ears to hurt or feeling like any noise bothers me. My knees and hip hurts a lot so the GP prescribed me with a very strong pain killer, which it does help to control the joint pain yet I still feel something in my head.
I have been having anxiety and depression lately to the point of cry for no reason, obviously the financial burden does not makes it easier. Everyone around me keeps telling me to stick with this job and keep strong… but to be fare, I think I can’t keep doing this anymore.
I really appreciate your words, time and reading this. 🙏🏻 may God bless you.
When I first go ill , it started with severe migraines, I had to be certified ill heath unable to work, there was no diagnosis as to why I was having these migraines. 5years down the line of it I was diagnosed with it SLE , between the diagnosis and now I managed to work at a secondary school and did volunteer work at a primary school school. Whilst I felt better but I was very tired every time I came home I ended up sleeping for a short while before starting up doing any work at home. When COVID came , I took the decision not to go back , as my health was getting worse with my back, hip and knee.
Sometimes , you need to assess , you need to know what your limits are and know when to stop and say to yourself and your body I need to rest now and now force it and keep forcing it . This is when your body will get stressed and when your body will retaliate and cause flares. Recognising your limits is very important for your health especially for a lupus patient. It is pointless stuffing yourself with loads of painkillers when you can control it .
I started having arthritis flares back in 2005, that was the way Lupus started, eventually it went away for a couple of years until after a hard time and a long sun exposure I had my first lupus flares, my kidneys started to fail and I had to have 6 months of chemotherapy just to stopped it from going to damage my kidneys, that was around 2017 and since then SLE has been part of my lifestyle.
Thank you for sharing this with me, I wish you all the best. 🙏🏻
I have been thinking exactly the same, I feel like I can’t be “eating” pain killers to be able to attend work and just ease the pain for the day, is not the way I want it to be and I need to change it before it becomes worse.
I hope you find some resolution. I was lucky that I have my own company and work from home and choose how little or much I do. The difficulty comes when working for someone, you just don't know when you will be ill or for how long. It can take days or months to recover from a flare up and all the hospital stays or doctors and consultants to see sometimes. There is no working through lupus flare ups just try not to boom and bust as that's not great for your body. Pace yourself, work out how many hours you can do before you feel ill. Summer will be worse as heat and sun will make you feel washed out. Perhaps think of where you can work inside without over exerting yourself and with flexi working if possible. Someone I know used to be a window fitter but could not keep up the physical work so trained to be a window surveyor and does that. Not as good money but keeps his health in check and with fewer sick days it might not work out much less. Put your thinking cap on and think how you can move to a less physical more flexible type of work. Travel less too using your brain to drive and keep alert will knock the energy out of you before you even start work. Good luck. Let us know how you do and if you need a good cry and feel sorry for yourself just do it you'll release your stress and frustration a bit and having lupus is rubbish, most people have no clue what we go through as we look 'alright'. There is always PIP if you're in the UK to consider if you're really struggling its a benefit not based on your earnings but to keep you in work and mobile. I am thinking about applying soon too as work becomes harder to cope with.
Hi, thank you for your reply, for your advices too, it means a lot to me to feel supported by everyone in here, it is becoming my new favourite place to go to and share how I feel with others who definitely understand me as well as I do. 🙏🏻 thank you all.
I am in the UK, I will check about PIP, although I would like to find something else to do for a living, I like to believe that the universe has opportunities for everyone including myself.
I used to run a family business in the Caribbean, but after being diagnosed with Lupus and the country falling into a difficult situation I decided to move away. So I left my family, friends, my home to start again and give my daughter the opportunity to learn a new language and grow in a place where she can be happier and have a better future, be safe.
I am so proud to know that she is bilingual now and she is doing great at school, this is my first priority… her future.
I miss the good days, the old days.
Thanks 🙏🏻 everyone for your replies and support. May God bless you all.
No problem and I don't know where you are from but being recently moved from London and living amongst a big Caribbean community, I miss rice and peas and a little bit of jerk chicken. Unfortunately Caribbean food has not reached where I am now in any great quantity. Hows your barbeque? There might be an opportunity there🤣Take care and keep well.
Well, I have not got any good Caribbean restaurant near by to be fair but my wife does amazing food 😆 and sometimes I do my own Bbqs. I used to run a butchery distribution where we focused on supply beef and pork to BBQ restaurants around city, also as italian we used to do the italian sausages for the italian restaurants.
Trust me, I have thought about some restaurant or food truck business like an opportunity! 😂
Take care and I hope you find a nice Caribbean restaurant near you 😉
Caribbean experience with food and also Italian food. I'm coming to yours for dinner😆 Nothing wrong with food trucks. Our Jamaican food truck guy in Croydon used to spend 4 days a week just doing lunches in the market from his truck and then spent 4 months over winter back in Jamaica. Alright for some but he must have made a semi-decent living! I hope your wife is a support, don't be afraid to open up to her and lean on her when you need to, my husband is great and he notices now when I need to leave somewhere and rest. We need our other halves to get through this. Also if you have time think about looking at Lupus UK and join a support group. Ours has online meetings once a month in the evening and we have speakers every so often; Rheumatologists, Writers, Nurses, Mental Health Workers. Without them I would be lost and our whatsapp is good for blowing off steam with fellow sufferers. This site is good as well.
I would love to do something like that, food truck food with italian/caribbean mixed 🤔 maybe grilled italian sausage burgers? I have a few ideas for the concept. 😂
My wife does support me, she does a lot, she prepares my meals, vegetables, she looks after me as no body has ever done.. 🙏🏻 I am truly grateful and blessed with her support as it makes my life better.
I will look for Lupus UK and take a look 😉
It feels great to have a place where I can express myself and feel comfortable, understood and supported. Thank you all 🙏🏻
sorry you in this position myself also. It is so hard knowing when you do something active you're going to suffer and so hard to get going to start with the dreaded fatigue and all else. Life is short whatever you do its got to be achievable or adds to insult your body already under, I found ive placed unrealistic expectations on myself and what family expect and just cant meet them, the hardest part for me (undiagnosed) was facing what I can no longer do having been a busy person and loved it that way. and the way im just a burden it feels. The hardest is not knowing from day to day how you will feel so its so hard to plan, in my head at times I feel better and think yes I could do this job and that job and be part of life's big picture then bam no I cant even brush my hair. I could work from home and sell creations but it doesn't make enough money to qualify for earnings from homework so even though willing when can it's not politically acceptable so I have no answer.
You have to put yourself first and just be realistic to what you can and cant do as you will make your health worse overstretching and ,you need to be able to meet expectations of what YOU can do. I think you know you may need to change with your post and maybe a change will be good for you. I wish you all the best and appreciate how tough it is to be in this position but you may enjoy work again if it is something easier on you than construction. Im sorry you are in this position , it is understandably scary, I feel the same, and wish you all the best but dg70 is right its being realistic and thats tough, its a vicious circle damned if we do damned if we dont scenario, but you will have good support here on your way
Hi, thanks for sharing your words with me, I feel supported and cared by you all, 🙏🏻
I believe that I need a me time to make a decision about what is the best for me and since all this matter is affecting my health and my mental health I will share this issue with my employer today in our meeting, I need to tell them that I am struggling to keep this routine as part of my daily life.
Hi ,I used to work at a school as an invigilator and occasionally as a sub teacher.
Hours are great as they are considered zero hours meaning you work as you can and when you can and you are paid by the hours. But because I currently I cannot walk because of back, my rt hip and rt knee/ leg issues ,I had to give up.
Have a look around at secondary school who requires invigilators . Also you will be required to be screened usually the schools pay for that. But the odd occasion you end up paying for it. But you can claim it back.
The school I was at was a grammar school all girls school. So I was just fortunate the kids there love to learn and wanted to learn we did not get as much problems with cheating as such but we did get alot of medical issues and anxiety issues being a grammar school as these children want to succeed.
Hi, thank you for sharing your experience with me.
I will take a look into this, I have never thought about it before but it sounds like an option.
my daughter always has supported me and she always makes me feel better, I suppose kids have that magic to make you smile and make your day more enjoyable.
Hi again Da vinci. You sure are receiving a lot of love and ideas. I would last ask you if you have a support network of friends? You mentioned wife and daughter are they supportive enough to make changes due to income/benefits change? Live in a less go go environment? Last, please pretend to put on a Superman suit everyday. Not to be one, not to act like one, but to carry your illness with the resolve it needs to have nourishing care from doctors nurses and other employees. I believe it’s out there. Best, MM
Hi, MM. to be honest, I wasn’t expecting to have this much of comments from people, definitely I feel a lot of love and care from everyone who took the time to text me. 🙏🏻 I feel grateful 🙏🏻
I have a couple of good friends I can talk to, although they are not near they support me and makes me feel better, that I am not alone.
Thank you MM, for your kindness and your support 🙏🏻 I wish you the best
Hi Da_vinci, it sounds like you are doing a lot of very physical work there, no wonder you’re exhausted! I too get exhausted from work and I have an office job, so we’re all different with how work affects us. Sounds like it’s really affecting you though.
I’ve done a couple of things to try and curb the exhaustion. One is I work part-time. Another is I moved closer to work which reduced my driving time. Both have made a huge difference to my energy levels and thus my mental health. Plus I wfh one day a week, but that might be more difficult in your situation!
I still struggle though, and sometimes I wonder how long I can keep this up. When I’m having a bad day, I let my manager know and sometimes my whole team, and they are very supportive. They give me extra time to get stuff done, and they support me to go home early if I can’t make it.
Ultimately, only you know how much you can do and whether this is sustainable. I wish you all the best in figuring that out.
So sorry to hear that you don’t have the support you need at work. I wouldn’t be able to survive without mine for sure.
I agree, it’s time to look for something else, and definitely closer to home! Do you do anything on the side that you could pursue? For example, I’m a writer outside of my day job, which is easy to do from home and even on bad lupus days. Maybe think about what else you enjoy, or what you’re passionate about in other spheres. Good luck!
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Fatigue has reached a whole other level, after 10.5 years. Scared it’s narcolepsy….
Lupus and Radiotherapy
Has anyone had neck gland scans to check if a dry mouth is Sjorgens? 
