When you get lupus the reality is that you will almost certainly have to make lifestyle changes and one of those may be to your work life. Whether you live to work or work to live, a job is an integral part of most people’s life. When lupus strikes it can often prevent people from continuing to work at all.
Can you work with lupus?
I’m often asked this question and it’s a bit like how long is a piece of string? Every one of us is different, some people can carry on working full time with lupus, some cannot work at all and in between are people who can work but only part time. It also depends on the type of work you do, someone in very physical or stressful work may find they have to change to another career.
Should you tell your employers?
Firstly, you are generally not duty bound to disclose any medical condition, unless your contract of employment specifically says you must tell your employer about any condition that affects your ability to do the job, in that case you must tell them. If you have a medical condition that could affect the safety of your colleagues or members of the public, you should also tell your employer, or you may find yourself being accused of negligence
Otherwise there’s no right or wrong answer to this question. It also depends on a number of factors including: how you feel about telling them, if lupus is already impacting on your work and what sort of employers you have - some are definitely more sympathetic and understanding than others.
Chronic illness is much more prevalent than people realise so your employer may already have experience of this. Studies have shown that about 30% of people are scared to tell their employers about a medical condition for fear of losing their jobs.
The advantage to telling an employer is that that they may be able to make adjustments to your working environment, hours etc to help you cope better. If you don’t tell them and you have time off work because you’re ill or have hospital appointments, this will interfere with your job and your boss won’t know why. This may lead to misunderstandings and even people thinking you’re being lazy which I’m sure you don’t want.
General advice seems to be to speak to your supervisor first and possibly getting your HR department involved, particularly if you want mediation. If you don’t feel able to do that perhaps try speaking to a trusted work colleague to see what they think.
Plan what you will say in advance and take a couple of notes with you. Keep it as brief and simple as possible, only disclose as much as you need/want to.
You could always print off our information about what lupus is or give them our website address if they want further details.
If you need to ask for changes to your work, think about what you would like to request, i.e. reduced hours/flexible hours, the ability to work from home occasionally, a change of job to something less taxing or even special equipment to assist you to do your job. You may find it to be a difficult conversation but if you want to continue to work in the same job it may be one you need to have.
Tips for working with lupus
Listen to your body and prioritise your health.
This should be your mantra on a daily basis. Don’t struggle on when you’re sick. I’ve done this and it’s definitely not worth it, you’re not at all productive so it’s better to stop and rest then start again when you feel up to it. Also don’t miss doctors appointments because you feel you have to work, you’ll be no good to anyone if you don’t look after yourself.
Prep meals in advance when you have the energy.
Prepping meals in bulk is a great idea for us, just make up more than you would usually and freeze in smaller portions. When you have no energy left you will know you have a healthy meal which can be popped into the microwave or oven. You can also grab one to take to work, even home made soup is a healthy lunch, add a nice wholemeal bun and you’re good to go.
Don’t beat yourself up if you have to get lunch from a supermarket, just try to make healthy choices to give your body fuel for the rest of the day. The same goes for snacks, try to choose something healthy, a chocolate bar may seem a good idea for energy at 3pm but you’ll suffer a sugar slump soon after and remember to stay hydrated, drink plenty of water.
Take meal breaks. I’ve pretty much never done that always grabbing a sandwich at my desk which is bad and no-one thinks any better of you for not having breaks. If the weather permits, sitting outside for 15 minutes to have lunch will make you far less stressed, is better for your digestion and will likely make you far more productive for the rest of the day.
Don’t overdo things in your spare time.
As tempting as it can be to fill your free time with other activities, doing too much can overwork you more than your day job. Learn to pace yourself and to say no! If you need an evening snoozing with the tv on in the background, rather than doing the cleaning, going to the gym, taking an evening class or going out with friends – don’t feel guilty for doing so.
Find a balance between work and health.
Many people put work before their health, but that shouldn't even be an option. Lupus doesn't mean you can't have a career, but you need to take care of yourself to do so.
Don’t push yourself too hard to meet deadlines etc, ‘powering through’ can be very harmful to your health.
Pushing yourself too hard can also result in poor quality work. You have a legitimate reason to slow down – don't ignore it. Find a healthy way to get work done without exhausting your body or your mind.
Wear comfortable work clothes.
Remember that story of the woman who was sent home for not wearing heels? That’s something you can’t put up with, especially if it literally will make you feel ill. Sometimes even if you wear a uniform small changes can be made to make it more comfortable for you. If you have to wear a smart outfit for work there are lots of choices that are both smart and loose fitting/comfortable.
Get up and stretch.
If you are sitting at a desk all day, it is important to move every so often – I always do when I feel my joints aching and stiffening. There are stretching exercises you can do at your desk such as these.
Remember you are human.
I think I’m superwoman but sadly we’re not superhuman (definitely super but still human!). Any time you struggle with workload, forget to do something etc remember, tomorrow is always another day. Push aside any bad days and start anew the next day.
Losing your ability to earn a living
Before stopping work entirely consider trying temping so you don’t commit to a long term job. This is also a good way to ease back into work or try out other jobs to see how you get on with a view to changing careers.
If you decide that you absolutely cannot work any more, even part time or on a temporary basis, it can be devastating.
You’ve probably worked for most of your life and may indeed have enjoyed your work, often when changing or leaving jobs we also lose the social aspect of our work, especially if we are then at home all day alone. You may have spent years studying to get the job of your dreams and now have to give it up, which of course will make you upset, even angry.
Most importantly where will money to pay bills/provide food etc come from? In itself, losing the ability to work is an extremely stressful situation and we all know what stress does to lupus. There are many resources (such as the Citizens advice bureau) available online that will address the questions about what you can do next.
Best and worst jobs for people with lupus
For a lot of people working outside would be a no go, sunlight can affect lupus patients and cause flares and rashes. The same goes for working under fluorescent lighting and some patients have reported problems with led lighting.
Physically taxing jobs, obviously construction work etc would be extremely difficult for most but even repetitive factory work would impact on joints such as wrists so may also be no good. Jobs in the hospitality industry would also come under this category, being a waitress or barman/woman require you standing on your feet for hours at a time.
I’m ex military and I know that there’s no way in the world I could do that job with lupus, It’s very physical, the hours are all over the place and often you work shifts. You can be called in at a moments notice so have little control over your working hours. I would guess police and firefighters would not be an ideal jobs for us either as both are physical and stressful.
Jobs with long hours (such as long shifts) or jobs with a lot of travelling. You may find a job like this ok to start with but after a while they could become exhausting.
High pressure and stressful jobs. Jobs that require you to meet very tight deadlines or targets will add extra stress which you do not want.
Any job you can do from home. Social media managers/website managers etc (like me!) are lucky enough to be able to do all their work from home as all we need is internet access. Some telecommunications jobs can also be done from home.
Other jobs you can do from home include translating and proofreading, these are generally done on a freelance basis, so whilst there may not be a regular pay cheque guaranteed it’s worth investigating them.
Jobs with flexible hours. As long as you can pick your hours you can control how hard you work.
Office work, as long as it’s not too stressful.
A few others I found included: consultants, therapists and counsellors.
WHAT IF IT ALL GOES WRONG?
What if you tell your boss and you get no support at all, or worse still they try to get you out of your job.
It’s an idea to keep records: how much time you have had off due to illness/appointments, what changes to your job you requested and how the requests were received, i.e. did the company try to accommodate you? What changes, if any, did they make? Which requests did they refuse and why?
There are quite a few articles online about workers rights and what to do if your employer doesn’t support you, including the following advice:
If you feel you’re not getting the help and support you need from your employer, contact your:
Trade union (if applicable);
Occupational health provider (if you have one);
Human resource department, or a human resources adviser;
Local branch of the Citizen’s Advice Bureau.
Here’s a few quotes from patients about working with lupus:
I work full time some days I really struggle but won’t let this damn illness beat me.
I work 24 hours as an emergency nurse and pull bank shifts if I feel up to it. It is a struggle with fatigue and pain but you need to read your own bodies limitations. I think my work is supportive and can be flexible with shifts if needed.
I work full time term time in a school, they are very understanding and there is a degree of flexibility in my hours.
I've bounced from Full time and Part time currently I’m full time. Saying that I want go to part time but can't afford it. I've changed jobs within the same company and my new team are brilliant. My old manager and some colleagues were awful. I got to the point that I was going to have a nervous breakdown. I still can't get over how ill I was. I still have panic attacks and crying fits but hopefully with PSTEC therapy I should be getting better.
I am a staff nurse working full time 39 hours including 3 x 12 hour shifts I find the chronic fatigue the hardest to cope with. My colleagues know and are understanding. I will keep going for as long as I can.
I work part time, 16 hours a week. I used to do more hours, but my employer has been fantastic and keeps me on my basic 16 hours. It’s made it much easier to cope. When I was diagnosed my rheumatologist gave me a leaflet for my employer to explain lupus to them, and how they can help.
I work full time in a finance department and work are brilliant with me as worked there 10 years! It really takes it out of me sometimes where I need all my strength to get me up on my bad days! I have the mantra that I won't be beaten by being ill.