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November's Topic of the Month - Working with Lupus (We want to hear your tips and experiences)

November's Topic of the Month - Working with Lupus (We want to hear your tips and experiences)

Our Topic of the Month discussions are back for November. This month we're chatting about 'Working with Lupus'.

Due to the impact of symptoms and the fluctuating nature of lupus it can be difficult for some people to continue working as they did before a diagnosis. Often with the right support from an employer and healthcare professionals some problems can be managed so that it is possible to stay in work.

We want to hear if you have any tips for working if you have lupus. When did you tell your employer you have lupus? Have you had any workplace adjustments? What support is available should you need it?

We would like to hear all of your tips and experiences (good and bad) and we’ll compile them towards the end of the month for an article. Please share in the comments section below, or email paul@lupusuk.org.uk

The article itself will be posted on the LUPUS UK Blog at

lupusuk.org.uk/category/blog/

All submissions will be anonymised.

14 Replies
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Hi Paul,

I was diagnosed in Feb 2014, I suffer alot with joint pain, had pneumonia twice, migraines, IBS, and just started with tinnitus which is annoying!

I'm a machine operator in a small factory, which I'm standing all day.

I have vasculitis in my right leg, so after 8 hrs on my legs it tends to swell alot!

I started having several days off work in 2015/16 with different lupus symptoms, as you can guess my employer wasn't too impressed.

He had a meeting with me regarding having considerable time off, I was shocked how little my employer knew about lupus! so I gave him.the leaflets from you guys to read through.

In Sept 2016 due to my absences from work, he referred me to an occupational therapist with my consent, as I knew I wasn't faking or hiding anything regarding my illness I wasn't too worried.

I met the OT in November, he asked me numerous questions, regarding my health, lifestyle and work commitments, I did ask him before we started that this meeting is for both parties and not just for my employer, and he said yes it's an independent review.

He knew alot about lupus which made me feel hopeful after leaving the interview.

In Dec 2016 my employer received the report which I'd already received, as you can say you want to read it before its released to your employer!

The report was fair and the doctor advised my employer to shorten my working hours to help with my situation!

At first my employer didn't seem impressed with the idea but as he sent me for this medical review, and being protected by the discrimination policy at work, he had to do something to help.

In mid Dec 2016 we had a meeting and he decided to reduce my hours, I know work Tuesday,Wednesday,Thursday leaving me to have Friday,Saturday,Sunday,Monday off, which gives me a nice long weekend to recharge my batteries!

I still have good days and bad days mainly joint pain in fingers or knees, and bouts of IBS which causes horrible abdominal pain and back pain!!

But knowing I have 4 days of rest I take my Naproxen and hopefully get through the days I work, I think I've had one working day off in the last 11 month since being on these new hours which is positive for both parties!

So if you are having alot of time off regarding lupus don't worry if your employer insists on you seeing a OT as it could benefit you too!

Good luck all

Steve

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Hi steve61,

Thank you so much for sharing your experiences. It is really good to hear that following your occupational therapy assessment you and your employer were able to find a solution and that you've managed so well since then.

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The last time I reply I was sure I was going to give up working. I ended up returning to work full time. I transfered department working with a manager that understand my condition and what may happen and how this may impact on my work. It did take a lot of discussions. They accepted that from time to time I will have to work from home or work at weekends departing on how I feel. I do get very tried and must ensure I get 10 hour sleep. so I have to make as much prepairation as I can over days off. Ie. all house work and even make all the dinners and lunches for the week. I have been back at work for 2 months now and ok so far. I found the busier I am the better I feel.

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Hi Leave-me-alone,

Thank you for sharing your experiences. It is great to hear that your employer is supportive and can be flexible to your needs. It sounds like you are very efficient by preparing your dinners and lunches in advance.

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Hi , Paul ,

When I was diagnosed over 15 years ago I carried on working but went down to part-time giving me days in-between to recover from swollen joints and to rest . I managed to work 6 years but did have some very bad flares on one occasion needing chemotherapy for a few months afterwards , I had caught a flu like bug which was going around in the workplace , I am immunosuppressed so at risk from any infections . I left that job when I had surgery for an acoustic neuroma , I had been very ill previously with terrible headaches and ear problems . 18 months after the acoustic neuroma surgery which left me completely deaf in my right ear I Decided to get a part-time job again . I didn't do too bad at first had swelling joints which I could deal with with pain killers and on occasions extra steroids to calm things down .I have terrible diarrhoea problems which did worry me and a couple of times I had to ask if I could leave work due to the diarrhoea as I was worried about accidents as I have had those and it would be awful for that to happen at work , the manager never looked impressed when I asked if I could go home . After about 18 months I was at work one Sunday afternoon and I felt very ill , really bad headache and earache and the supervisor said you should go home and ring the doctor you don't look well at all . To cut a long story short I had Meningitis and 12 hours later I was in intensive care at hospital and they rang my family telling them to come to the hospital straight away as they didn't think I was going to make it . Again people at work had been ill with a bug including ear infection and I picked it up but because of my weakness in that area it was almost fatal for me . I was off for 4 months on that occasion as I also got a dvt when in hospital . My employer had kept my job open for me and paid me when I was off but I now believe he only did that because I nearly died . Only a few weeks after going back I developed a chronic back pain which was horrendous yet I struggled for months going into work in agony , the other staff said I was mad to go in like that but I felt guilty as I had had so much time off work a few months earlier . One Saturday the owner came in the shop and I was there barely able to move and do the job , he didn't say anything to me but I saw him give me a funny look . The week after he got me in the office and said I am a bit concerned that you don't seem to be showing the same enthusiasm for the job as you did before . I said I have been in absolute agony for months with my back yet still came into work noone else would have in the same situation . He then said he wanted to write to my gp to ask them to declare me unfit for work .I rang ACAS for advice and she said him writing to gp etc would take months to sort out and she said if you are in such agony you may be better resigning on medical grounds and they will have to pay you a months wage and so that's what I did , I now claim esa .I sometimes think now about trying to do a part-time job again as I had a stressful time when my esa renewal came round last time , esa stopped and had to appeal , did get it back but in 2 years will have to go through the nightmare again when my next renewal comes up something I am dredding but because I am immunosuppressed the thought of going to work again scares me especially after the Meningitis , I just worry about catching infections due to being immunosuppressed , the meningitis nearly killed me , the next infection might actually kill me . They say don't they that people with lupus usually die Because of infection they get due to immune system problems . I think working is very risky with this disease especially when you are immunosuppressed .

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Hi Buffy14,

Thank you so much for sharing your experiences with us. Since you stopped working have you found that you can manage your lupus any better?

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Oh yes definitely and I have definitely improved to an extent , obviously if you are not working you can rest a lot more to help with the fatigue , when you are struggling with diarrhoea it's easier to manage at home without worrying about embarrassing situations . You can pace yourself at home so that you don't do too much and increase the joint pain and inflammation . I would love to be able to work , I would like to buy a slightly bigger house , I live in a tiny one bed house , I did live in a bungalow previously but had to sell it as I couldn't afford the mortgage when I lost my job . This house has stairs and the way they are designed I couldn't have a stair lift here . I just worry about becoming really ill again and catching infections if I go to work .I have other issues aswell as SLE , osteoporosis , on warfarin for blood clots , deaf in right ear after acoustic neuroma surgery and still have problems with that , in hospital 3 weeks ago with infection in the scar area , that's happened a few times and leaks of CSF fluid . I don't know if I would even be able to get a job at my age 57 and with my health issues .

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Sad to hear that. I pray that you become in the best of health and wealth. What do you think about herbal treatment? My father keep making me drinks with herbs but never really tried if this will help for Lupus.

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Thank-you , i doubt it would help , some herbal things may help a little with fatigue for some people , you do have to check with a doctor before taking anything to make sure it is safe to take with your medication though .

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I was diagnosed with lupus in Feb 2011 and one of the big issues was fatigue and especially travelling as I worked in London. When I returned to work I had a phased in period where I started doing half days, then leave early afternoon before the full days. Also companies have to listen to requests for flexible working arrangements, I put a case forward to work from 7am until 3pm. This worked for me as I didn't have to travel in very busy times of the day. I would say that the company I worked for were pretty supportive at the time.

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My work place (nhs) have been amazing. Kept in touch with me throughout my sick leave. Supported my return to work with phased return. Adaptation in the work place through occupational health. And time off for hospital appointments. Cannot complain and because of them I will continue working as a nurse ( a job I love) also flexible working hours too 👍

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Hi Twad, I'm really pleased to hear that your employers have been so supportive. Thank you for sharing.

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When I was diagnosed I had a job that had lots of overtime, responsibility, and stress. The hardest part for me was dealing with the extreme fatigue and brain fog that accompanied that fatigue.

I live in the U.S. and we have a law called FMLA (Family Medical Leave Act) that allows you up to 3 months a year off to deal with a serious medical condition and still keep your job. I took intermittent FMLA leave for a day or two when I became overtired, and found that I could manage OK if I made a conscious effort to mind my health and get plenty of rest. So if I had a hard or long week at work, I'd make sure to rest the entire weekend rather than pushing myself beyond limits, and take a day or two off periodically to recharge. You need to adjust your lifestyle and pace yourself.

But I eventually realized that particular job was just too demanding and stressful and not suited for intermittent FMLA leave because the work was always piling up when I took a day off to rest and they had deadlines that weren't conducive to being flexible. It wasn't fair to me or the company or other co-workers who had to compensate when I took time off for me to try to stay in that job forever. I became clear I just couldn't do more than 40 hours per week or take the stress without worsening my lupus, so I started looking for a job that had less stress, less overtime, and more flexible hours.

I found a job at another company 8 years ago that is less stressful and lets me work from home most days and am only in the office about once a week. I rarely have to do overtime, and if i do do some, I can take time off to compensate and rest. Since changing jobs, I rarely need to take any days off other then the usual holidays and vacation, and my lupus flares are few, minor, and far between.

So a lot of working with lupus is recognizing when a particular job or career just isn't suited to dealing with a chronic illness that is worsened by stress or long hours or little ability to rest. You may need to change jobs or even change careers and re-adjust finances or where you live, but it doesn't have to be a case of either work or be on disability if you put the effort into finding a job that allows you the flexibility to manage your lupus and not over-stress/over-tire yourself.

If you do become disabled from a particular job/career, disability companies/organizations will work with you to help you get retrained in a new career and/or placed into a job that allows you to manage your lupus and still work. So you need to take advantage of that if offered. Maybe you need a job that is only part-time, or that is only working from home to avoid a stressful commute and control your environment, or one that isn't too demanding physically or mentally. Know what your triggers are and be realistic. But you can find those jobs and adjust your lifestyle if you work at it.

I really wanted to work, and found both jobs and disability companies who wanted to help support my desire to work. I tried to focus on getting back to work rather than getting out of work (a positive rather than negative perspective). They can be amazingly cooperative if they think you really want to work in spite of your medical condition (are enthusiastic and eager to work), and uncooperative if they think you are trying to find ways to get out of working or use your illness as an excuse to get out of work or for performing badly in the job.

So keep a positive attitude to show you want to work and to do a good job rather than try to to retreat into the world of lots of excuses. Get your doctors to help by certifying what you can and can't do (i.e., provide them with proof you are not just making excuses), then try to negotiate with your employer.

But some companies are more empathetic and accommodating than others towards chronic illness, so it is important to look for and find those employers and careers that lend themselves to working with you rather than against you.

Don't give up if you want to work, but be realistic about what you can and can't do. Some jobs are better suited to being flexible, so better to put your health first, and look for those jobs/companies that have situations that will allow you to both successfully work and do well in your job while still addressing the needs of your health issues.

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Hi AimeeA,

Thank you for sharing your experiences and advice.

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