Staying in work is likely to be one of the most important goals for you and your family. Lupus is a condition that can be controlled for many by using appropriate treatment to reduce the activity of the disease. Many people with lupus can continue in work as they wish with only minor adaptations.
Work isn’t just about money. Of course, it is better financially if you can stay in work, but there are other benefits in working. Work is an important part of life and is known to improve health by increasing self-esteem and wellbeing. For those who can continue in work with lupus, there is a beneficial effect on all aspects of home and work life, including less depression and isolation.
“It gets me up in the morning. Knowing that I have to be at court and on top of the case is a real motivation for me, even if that sometimes feels like an impossible achievement.”
What can I do to cope better at work?
Everyone copes with the effects of their lupus in different ways. It’s worth thinking about how to make full use of the help available. There are some practical things you can do yourself and there is help available in the workplace;
- It helps to be proactive. Find out as much as you can about your lupus. The more you understand your condition, the more you will feel in control about the decisions you take.
- Make your employer aware of your lupus and the ways that it can affect you. We have a free booklet called, ‘When an Employee has Lupus’ which you can request from Lupus UK
- Remember that your rheumatology team is there to provide support. If your condition changes or you feel it is not well managed, ask for help quickly. Don’t just put up with it – they may be able to change your treatment regimen to help keep your lupus reasonably controlled.
- A physiotherapist can help with pain management and simple exercises, such as stretching and keeping mobile at work.
- A podiatrist can help with problems with your feet or ankles. They can give advice and treatment to help reduce your pain. It can make all the difference at work to have comfortable feet.
- An occupational therapist usually takes the lead on workplace issues. They can help with: joint care, ergonomic advice (advice on the interaction between people and equipment), advice on gadgets and splints. They can also carry out workplace assessments.
– Your local rheumatology department may have an occupational therapist in the team or in a separate unit in the hospital. You can ask to be referred.
“Use whatever props you can to make your working life easier. I use wrist supports for typing and an upright mouse. I sometimes even ask to wear gloves in court when my Raynaud’s is playing up.”
“I work at a desk so I received help from Access to Work. I have an adapted chair, foot rest, adapted mouse, a sliding contraption (no idea what it’s called) that I pull down over my keyboard so I can write (meaning I don’t have to turn in my chair), I’ve amended my hours/days of work on several occasions, I can have time off for anything I need, and flexibility with these hours. I’m very lucky – I wouldn’t have a job if I didn’t have such an understanding employer. I work for the public sector.”
It is important to learn to recognise how lupus affects your body and know when it is time to stop. Prevent yourself from pushing beyond your limits and potentially resulting in more time off sick from work. By developing the skills of pacing and planning and managing exercise/rest, a rewarding work experience will hopefully be possible.
What are my biggest challenges?
The challenges faced by people with lupus in the workplace will depend upon their individual circumstances and presentation of symptoms. However, it is probably fair to say that two of the biggest challenges faced by the majority of people with lupus are pain and fatigue. Learning techniques to help you manage these symptoms is one of the best investments of your time you can make. A good starting place is to take a look at our previous blog articles;
– Managing Fatigue
– Pain Management
“I work in a call centre and have a special desk which allows me to stand and sit whist on the phone. I also have an adapted chair and a heated mouse to make the conditions more bearable. I have been allowed to reduce my hours from thirty five to twenty eight, and have shorter more frequent breaks to help.”
A programme that you might find helpful is provided by Self Management UK. Their FREE self-management courses provide tools and techniques to help you to take control of your health and manage your condition better on a daily basis. For details and to find a programme near you, visit www.selfmanagementuk.org
Whom should I tell I have lupus and when?
There is no ‘one size fits all’ answer: you will need to make a judgement call about the best time to tell your employer. Your decision will of course be influenced by the type of work you do and whether, or how much, your lupus affects your ability to do the job.
If you’re currently employed
It is particularly important to consider telling your employer if you think you may need some help, now or in the future. This can avoid the possibility of your employer treating any future problems with your work as a disciplinary issue. You are legally protected against discrimination on the grounds of disability from the first day of your employment, provided that you have told your employer about your condition. It is therefore advisable that you disclose your illness to your employer.
“Since diagnosis, I’ve had four different managers and have been honest about my condition from the very first conversation. I end up having the same conversation over and over; it’s like ground hog day. It doesn’t matter how many times I explain, they truly don’t understand and I feel like they don’t really listen.”
Some people can feel guilty about not being able to fulfil their role as well as they used to. This is a perfectly normal reaction, but it is also important to adapt. An employer’s obligation to make reasonable adjustments is an on-going one, so it can be reviewed if your condition changes.
Large employers normally have their own human resources (HR) department and many have access to an occupational health practitioner. They may ask you to have an assessment so that they can fully understand your ability to do your work and provide appropriate support. It is important that your line manager knows about the process – and ideally is supportive of it – or you may find there are differences between corporate promises and the ‘real world’ of the business day to day.
Smaller companies often do not have a professional HR person or use occupational health resources. However, such companies are often more likely to treat you as an individual. It is still important to tell them what you can do now and explain how your lupus may impact on your role.
Do I have to tell my employer?
As an employee you have a duty to disclose details of your lupus to your employer if it could cause health and safety problems e.g. If your lupus causes cognitive problems, there would be an issue if you couldn’t concentrate and your safety or someone else’s might be at risk as a result.
If your condition wouldn’t cause any health and safety concerns for you or someone else the decision of whether to tell your employer about your lupus is yours. Under the Equality Act 2010 it is unlawful for an employer to discriminate against a person with a disability. If you choose not to notify your employers of your illness it could affect any future adjustments you may need within the workspace to enable you to fulfil your role.
“Having open, honest conversations with your employers really helps. It’s important to explain that a flare-up doesn’t always have any warning and that the time they last is completely variable. Formally documenting the condition as well is important in case you need time off for appointments etc.”
“My employers expect you to be able to fix a flare-up quickly, or take a pill to make it disappear. They think because you look ok, you feel ok. They don’t understand that actually working and remaining in work is a massive achievement.”
Should I tell my colleagues?
You may wish to tell colleagues about your lupus. Again, this is a decision only you can make, but it may be in your interests. If you’ve had adjustments made to your job, telling colleagues can help them to understand your abilities and have an appreciation of what living with lupus is like. However, you can ask your employer to keep the information confidential if you prefer.
“I was open with my employers in my interview, and they and my colleagues have been fantastic. I work in a pre-school so it can be quite busy but I love it and am grateful that the ladies I work with are so supportive. I am having a little flare at the moment and I could have easily not gone to work today as I feel so drained, but I find being at work is a welcome distraction, especially with the little ones; their excitement about what the day will bring is infectious! I really think talking to your employers and keeping them in the loop with what is going on with your condition is very important as they can’t help you if they don’t know what is going on.”
If you’re applying for a job
As a general rule, you should be upfront with a prospective employer about the fact that you have lupus. However, it is not a requirement and some people choose to wait and see how the recruitment process goes before deciding whether to tell them or not. According to the Equality Act, employers should, generally, not ask candidates to complete any health questionnaire, or attend a medical, until they have made a formal job offer. Employers may still ask candidates if they have any disabilities that would require adjustments being made during the recruitment process.
If, after a job offer has been made, you are asked specifically about your health, you must of course answer truthfully, and discussions at this point in the process should include reasonable adjustments that may be made to the role.
“I told my new employer in the job application and when I got the position they asked if I would want to speak with their occupational health advisor so that they could find out what they can do to help me in my work (I couldn’t think of any adjustments I would need when they asked me). I’m really impressed that they would offer services to find out more about how they can make my day to day working environment more suitable! I know a lot of companies aren’t as understanding.”
If your lupus means that you will need adjustments to the job you are applying for, you should discuss this with the employer and in advance consider any reasonable adjustments or aids you may require. This is particularly important if there are health and safety considerations. (This could range from your lupus affecting your ability to leave a building easily in case of fire, to door knobs which may be difficult to turn). In practice it is very rare for employers not to be able to make adjustments to comply with health and safety legislation and only rarely should this be a barrier to you continuing in your job.
What can I do if my employer treats me unfairly?
If you feel you are being treated unfairly because of your lupus, you should first discuss this informally with your manager. If necessary you can then register a formal grievance following the company’s grievance procedure.
“My workplace doesn’t understand and just think after a day’s rest you are fine. They don’t understand the fatigue. I’m a nursery nurse and the job is so demanding. They make me feel bad when I phone in sick.”
If you belong to a trade union your representative can support and advise you. If the grievance procedure does not lead to an acceptable solution, as a last resort you may have the option to take a case of disability discrimination through an employment tribunal.
You MUST notify the Advisory, Conciliation and Arbitration Service (ACAS) of your potential claim before you can make a claim to an employment tribunal. ACAS have a process of trying to resolve a dispute before it goes to a tribunal. This process is free and confidential and is called ‘early conciliation’.
Should I consider a different type of work, or reduce my hours?
Certain jobs, such as those involving heavy manual work, can be particularly difficult to cope with when you have lupus. Before you make any decision about changing your work, talk to your rheumatology team to find out if they think your disease is adequately controlled. If they feel it is, it could help you think about the next steps.
You might want to discuss the possibility of retraining or transferring to another job within the company – if this is a possibility. Employers are not required to redeploy workers if there are no vacancies, it is however something that they may need to consider in making reasonable adjustments. You may also want to consider the possibility of adjusting the number of hours you work to make it more manageable.
You might consider asking for help from your employer, their Occupational Health Service, HR team, NHS Health at Work (contracted OH services) or your Disability Employment Adviser.
“I am struggling with work and my condition. As I work as a teaching assistant in a primary school I can’t bring work home and have spent more time unwell at home than at work. I am now facing the sad truth that I may not be able to carry on the job I love.”
What if I am no longer able to work?
Despite adjustments being made in the workplace, there may come a point where you feel you are no longer able to continue working. This can be a very difficult decision to make and it will potentially have financial and/or emotional implications.
Before making a decision about stopping work, talk to your rheumatology team to find out if they think your disease is adequately controlled. They may be able to make adjustments to your treatment or advise a different type of work. They may suggest that a break from working or early retirement would be better for your health.
If you’ve been paying into a workplace pension, ask your employer or pension provider whether there are any ill-health benefits you might be entitled to. If there are, find out how much they’re worth and how long they will last. For example, you might be able to retire early if you’re unable to continue working.
“I put in for ill health retirement after much soul searching. It broke my heart but I knew I couldn’t do it anymore. Despite occupational health saying I wouldn’t get it, I did thankfully. That was ten years ago. I don’t think I would have survived if I had carried on. I was fortunate to get a pension at 50, I know many need to work or go on benefits.”
If you find the transition from working to not-working is difficult, you might find it helpful to request a referral for counselling from your GP. There are also many private counselling services.
“I told my employer straight after I got diagnosed. After a year and a half of being off sick I was told that I’m no longer the right person for the job. They didn’t “fire” me; they let me go for my own good and wellbeing. Over the last five years being out of work I had time to focus on myself, learn how my body is reacting and what to expect and also I had time to study part-time with Open University to prepare for going back to full-time education. So in hindsight, being let go from my job was the best thing that happened to me. I was lucky!”
LUPUS UK Employment Guides
Our two booklets about lupus and work, “I Want to Work: A self help guide for people with lupus” and “When an Employee has Lupus: An Employer’s Guide” offer further information and advice. These booklets can be read and downloaded from our website HERE. Alternatively you can contact us to request physical copies by post, free of charge.
“I took the LUPUS UK employer’s booklet. My employer knew I had lupus but it had never bothered me too much until this year. I took the booklet as an informative tool to ensure they understand what lupus is. I then had an appointment with occupational health and provided them with a copy too. They were grateful and said they will look at the lupus website and obtain further info. Each case as we know is different but the more they understand the better. It also informs them that you’re covered by the Equalities Act too which some employers may not know.”
If you are interested in learning more about trade unions and how to join one, please go to https://www.gov.uk/join-trade-union
Disability Rights UK
Disability Rights UK have a range of factsheets and guides related to work which you can access HERE.
Citizens Advice has loads of information and guidance about work and your rights HERE.
Scope has information about disability employment services in your area which help disabled people to find jobs, work experience and volunteering opportunities that will develop their careers – HERE.
***Please note that this article is written for informational purposes only and should not be a substitute for professional medical advice or treatment. Do not delay seeking or disregard medical advice based on information here. Always seek the advice of your local family physician or other qualified health professional before starting any new treatment or making any changes to existing treatment. It is also advisable to consult a medical professional before making any changes to diet or starting complementary remedies, which may interact with other medications.***