First of all, to be clear, let’s look at the definition. A chronic illness is defined as a health condition that is persistent or long-lasting in its effects, usually a year or longer. It should also require regular medical appointments and may affect an individual’s activities to some degree. When discussing a chronic disease the time length is three months or longer. Examples of chronic illnesses include; cancer, autoimmune disease and long COVID.
Experts are increasingly considering mental conditions such as depression to be a chronic illness. This is fantastic news for chronic illness warriors whose illness may be more invisible. I am particularly pleased as rheumatoid arthritis can be mostly invisible when my medications are working.
In order to support staff, workplaces need to create environments where all workers feel safe and secure sharing their chronic illness diagnosis and the day to day effects. Similarly, employees need to feel confident advocating for themselves in the workplace, even when they may not. I know that this is a particularly hard thing for new patients to navigate as being diagnosed is overwhelming. It is a skill that can be learnt and generally comes with time and experience.
I recently attended a return to work meeting with my boss. It was one of the most daunting meetings I have attended. Despite knowing the reasonable adjustments I wanted to ask for, I was unsure how to communicate my diagnosis and everything that entails with my workplace.
Introducing your work to your chronic illness
My first question was, how much do I share about my condition with work? From my experience, it is best to be completely honest. When attending a return to work meeting, I told my boss everything about my condition, warts and all. I spoke about from the moment symptoms started until the present day, giving a list of highlights. Although thinking about it, perhaps I should call them lowlights?! After all my rheumatoid arthritis diagnosis has not been the most fun time of my life!
I think it is extremely important for your boss and work colleagues to understand how bad your chronic illness can be and the symptoms you might exhibit on these days . This way, during a flare up, they are prepared for the concessions you may need. For example, you may require time off work or help with aspects of your job in the short term. This does mean one or more colleagues will, more than likely, have to pull more weight at work whilst you recuperate. In my experience, people are generally more accommodating when they understand the reasons behind you needing extra help.
Another thing you may be concerned about is whether your colleagues will understand or be lenient to your condition. It is up to you how much you share with your colleagues, it is your medical condition. In this instance, it is important to communicate openly and honestly with your colleagues about your needs (within the limits you want to share with them). I’m a firm believer in open communication as it gets you the help you need. I know us chronic illness warriors are great at telling white lies all the time! On almost every occasion when I am asked how I am, I rely “I’m fine thank you”, when really the reality can be quite different. However, if we communicate truthfully in this aspect, our colleagues have clearer idea of how we are and can respond accordingly.
Preparing for your meeting
For those nervous about communicating their needs, it may be easier to meet with your main boss or line manager for a one-to-one meeting that may feel less daunting. It can also really help to have a range of notes written that you can refer to and ideally pass a copy to the work person you are meeting with. This takes a lot of pressure off know that you’ve already thought about it and have notes to help if you get flustered. For those feeling very nervous it might be worth exploring taking a union rep or trusted work colleague along to your meeting.
Overall, chronic illness warriors should look out for themselves. Our diagnosis does not limit what we deserve, whether that be in our personal or work lives, nor does it give anyone grounds for mistreatment. It is essential that we communicate openly and clearly to get the best help we deserve.