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When I was initially diagnosed with Lupus at the age of twenty-one, I was adamant that I was not going to let my condition dictate my life. Suddenly, as if overnight, I went from a party girl to a hermit.
Suddenly, I was seeing less and less of my friends, to whom it seemed like they were constantly making plans. Increasingly, I was having to make adaptations to my going out.
Eventually, I came to terms with the fact that, to some extent, I would have to make lifestyle changes, but I promised myself that I would not allow Lupus to affect my means of supporting myself financially by holding down a job.
I am not going to say it was easy having a full-time job, especially as my mind constantly told me that because I had Lupus, I was faulty. This led me to not only feel like I had to prove myself to my employers and colleagues but also left me with guilt for having Lupus and feeling like I was letting my team down if I had to take time off if I had a flare or be out of the office to attend the many hospitals and GP appointments I had to go to to manage my condition.
This led to me pushing myself to go to work. If someone asked me to do something, I felt like I could never say no, even if it was not in my job description, because I needed to prove to everyone and myself that I was not faulty and I was just as good as everyone. So, when I was feeling unwell, I had to drag myself into the office.
Recently I decided to stop working to entirely focus on my condition and work with the numerous medical professionals to get my condition under control without being riddled with anxiety.
This, however, comes with its own stress. I found that when meeting new people and being asked what I do for a living or where I work, I dreaded admitting that I was currently out of work in case they labelled me lazy, useless, or simply a hypochondriac who doesn’t want to work despite my being extremely ambitious and having a strong work effect.
But that is my journey. It is not the journey of every person with Lupus, and everyone’s symptoms vary.
If you are at the start or even in the middle of your journey, I have compiled some information to aid you in your work while you have Lupus.
Is It Possible to Balance Work And Lupus?
The ability to work while having Lupus on the individual and how having Lupus affects them, as everyone who suffers from Lupus is different. Many people can continue working full-time with Lupus; there are those who either have to take breaks or cannot work at all, and there are people who can work only part-time. This is also dependent on the type of work they do; however, often, people who have jobs that are very physical or stressful work find they must change to another career that does not affect them as much physically or mentally.
Should You Inform Your Employer About Having Lupus?
You are not duty-bound to disclose any medical condition unless your contract states that you must disclose any condition that affects your ability to do the job.
This is especially important if your condition could potentially endanger the members of the public or your colleagues, as you would run the risk of being accused of negligence.
Honestly, there is no right or wrong answer to this question, considering what sort of employers you have and how you feel about telling them, and that although employers legally have to adjust your working environment, hours, etc., to help you cope better. If you choose not to tell them and then find you are having to take time off work due to ill health or hospital appointments, you could see that this will interfere with your job, and your employer won’t know why, possibly leading to misunderstandings and people even accusing you of laziness, which I’m sure you don’t want.
It may prove helpful to suggest speaking to your direct line manager in the first instance and then considering getting your HR department involved. If you do not feel you can do that, confide in a work colleague you trust for advice.
An occupational therapist can also be helpful with workplace issues. They can conduct workplace assessments and advise what your company can do to support it. Most companies have their own occupational health advisers that you could also approach, as they have a duty of care to support the health of all employees at work.
If you feel you need to make changes to your work to better support you, carefully think about what that support would look like, e.g., reduced hours/flexible hours, the possibility of working from home when you are feeling poorly, or changing your role to ensure that it is less taxing.
Although these conversations have the potential to be difficult, if you want to continue working in the same job, they may be one you need to have.
Listen To Your Body and Prioritise Your Health
While I often fail at this, do not be like me; make listening to your body and prioritising your health your priority and try to work on the work when you are not up to it and don’t struggle when your body is telling you that you shouldn’t, believe me, it is not worth it, as you will not be productive, trust me it is more beneficial to stop and rest up then start again when you are feeling stronger. It is also paramount that you do not miss any doctor’s appointments to work, and remember you are no good to anyone if you do not look after yourself.
Protect Your Personal Time
At times, there may be a desire to work in your free time to keep up with your caseload. This is not a good idea, as doing too much can overwork you. Instead, concentrate on pacing yourself and politely saying no without feeling guilty.
Check out my post on the art of saying no.
Be sure to push yourself enough to meet deadlines, etc. ‘Powering through’ can be very harmful to your health.
Too many people, even those who do not have a chronic condition such as Lupus, put work before their health when that should not even be an option. Remember, you have a legitimate reason to slow down, so please do not ignore it and explore a healthy way to get work done without compromising your health.
Effects Of Losing Your Ability To Earn A Living
Before opting to stop work completely, think about temping so you are not committing to a long-term job. This would be an excellent way to return to working full-time or experiencing different jobs. If you decide to change careers working from home, depending on the nature of your role, working part-time is also an option worth considering.
It can be devastating if you feel the above suggestions are a suitable option and you cannot continue working full-time, part-time, or on a temporary basis.
It’s likely that you worked for most of your life and even enjoyed your work, especially the social aspect, especially if the alternative is home all day alone despite studying for years to get the job of your dreams and then having to give it up, undoubtedly upset, angry or even depressed.
Of course, there is the stress of where money will come from to purchase food and pay bills.
Losing the ability to work is obviously an extremely stressful situation, and of course, we know the effects that stress can have on those who suffer from Lupus.
However, many charities, such as Lupus UK and the Citizens Advice Bureau, can help you address the questions about your next steps.
Remember, You May Rock, But You Are Not Made Of Stone
In my head, I am a superwoman, and I want to do everything and help everyone. Sadly, I am not superhuman (super, but still human!), and neither are you. Whenever you struggle with your workload, forget to do something, like forget to send that important email and tell yourself that tomorrow is always another day.
I cannot stress enough how you do the following when necessary:
Ask for and accept help.
Rest as often as you can, even before you are tired.
Let someone know if you are having a bad day so they can effectively support you.
Below are some resources that you can access for support.
What If The Worst Happens?
In the instance that you inform your employer about your condition but you get no support, or you feel they may try to get you out of your job, you must keep records of all the time you have had to take off due to illness and appointments, any changes requested to your employer and how the requests were received, i.e. did the company try to accommodate you? What changes were made to ensure comfortability in your role? If any, what changes did you suggest that were refused, and what were the reasons for doing so?
Be proactive and find out all you can about your Lupus. Understanding your condition, how it affects you, and what your triggers are will help you feel more in control of any decisions you make.
Providing your employer with information leaflets about Lupus could prove helpful as Lupus, as many people still need help understanding or are unaware of it.
Lean on your rheumatology team for support and quickly go to them for help if you notice any changes to your condition or feel that it is not being well controlled. You may need to adjust your treatment plan to control your Lupus.
How To Manage Working And Having Lupus
Two of the main challenges for people with Lupus staying at work are pain and fatigue. Finding coping mechanisms for these symptoms would be one of the most valuable investments of your time. Many self-management strategies are available that you can implement, such as joint protection, sleep management, exercise, relaxation, stress management, and pacing yourself.
Lupus can often affect your joints and muscles, so if you are sitting at a desk all day, it is important to move around regularly or perhaps try researching exercises you can do while at your desk.
When correctly utilised, these strategies could slow down or prevent further problems from arising in the future, allowing you to continue working.
Self-Management UK
Their free self-management courses provide tools and techniques to help you take control of your health and manage your condition better daily. For details and to find a programme near you, visit http://www.selfmanagementuk.org.
Discover more about my journey with Lupus by checking out these insightful posts:
- Lupus Symptoms: 22 Signs of Lupus You Shouldn’t Ignore
- ThisIsLupus:11 Essential Tools To Help You Self-Advocate Effectively
- 9 Important Facts for Family & Friends Of Lupus Sufferers
- How to Support Someone with Lupus?
- What Not To Say To Someone With Lupus
- Living with Lupus – The Lesser Known Side of the Story
Disclaimer:
The information and tips in this post are based on my experiences and are provided for general information and educational purposes to aid other Lupus warriors in finding their own coping mechanisms. They do not constitute medical advice for any specific medical condition or situation. This Wots Her Name Again? should not be used or relied upon to diagnose or treat a problem, disease, or medical condition.
Discover Valuable Resources for Navigating Lupus – Your Guide to More Support:
Rest assured, if you or a loved one are diagnosed with Lupus and need further assistance or information, these reliable and trusted resources can provide the help you need.
Lupus UK
Lupus UK: A Key Resource for Those Affected by SLE Lupus UK is a voluntary organization in the United Kingdom that crucially provides information and support to individuals affected by systemic lupus erythematosus (SLE).
Lupus Trust
The Lupus Trust (previously St Thomas Lupus Trust) is dedicated to supporting lupus research at Guy’s Hospital and raising awareness of
Hibbs Lupus Trust
A Personal Journey Turned into a Mission The Hibbs Lupus Trust, a registered charity founded in 2011 by the Hibbs family, was born from a personal journey with Lupus and a strong desire to create meaningful change.
