Life in the workplace can be difficult at the best of times, but what if you are in the mist of your career and you are struck with chronic illness? How do you navigate being uncontrollably ill whilst being expected to keep up with your responsibilities in your job role? Today I would like to share with you my experience of becoming ill in the workplace.

My workplace experiences

My own personal experience begins with leaving university with a degree in Psychology and believing I could do whatever I wanted. Before realising I was ill I did a number of different jobs during my time at uni including waitressing and retail work, not understanding why doing a four hour shift was killing me. After uni I moved into a admin position which led me into the corporate world working in a HR department. I was earning good money working five days a week on full time hours, and at the age of 25 feeling I was around 80. Whilst my colleagues worked a full week and had hobbies in the evenings and then busy weekends I would get home and collapse on the sofa just about managing to have food, (prepared by someone else), before falling asleep. My weekends were a blur of sleep and pain not being able to leave the house because I needed so much rest. Going back to work on a Monday morning was always a struggle as I felt the weekend hadn’t been long enough, and having to hear everyone else’s tales of great weekend adventures was simply depressing. Yet the more tired I got the more I pushed myself not realising at the time I was doing myself more harm than good. My ME/CFS and Fibromyalgia conditions had developed and were in their full glory with every working day a battle with feelings of pain, tiredness, sickness and dizziness just to name a few. Needless to say this was exacerbated by the stressful working environment I was in.

My never-ending ill health led me to having multiple absences from work with each absence lasting months at a time as my body struggled to function. Each time I returned to work I was ushered into a disciplinary meeting whereby I would be read the riot act about absence. Each time I listened and apologised even for being ill, and each time they would tell me they would ease my workload in order to support me and all I had to do was speak up when things were getting too much. So I did just that I spoke up when my symptoms were getting too much, but unfortunately my concerns were ignored. As a result my conditions would take over and I would be signed off work again.

After five years of working like this I made the decision to leave my job as my body and mind were no longer mine to control. I did not return to the working world for 18 months in my quest to get ‘better’. I chose to go back to work after 18 months as I felt I was ready to try again, but this time on part time hours. I lasted 8 months during which I had another extended absence and once again had to walk away. The people I worked with were lovely, but once again my individual needs were not conducive to the environment I was working in.

It was after leaving that job I realised that chronic illness is something I will always have to consider in my working life and finding an employer who understands that will be vital in me trying to keep as healthy as possible. An employer who doesn’t just say they understand disability in order to tick the equality acts box, but an employer who truly listens and acts on what they hear.

The reality of ME/CFS in the workplace

It is wrong to assume every person with a chronic illness cannot work, but for ME/CFS sufferers in particular the whole concept of holding down a job is a job in itself. People assume it is the work itself that causes problems which of course it does, but so do all the elements around holding down a job. From being able to get up early in the morning, losing an established health routine, to the commute into the workplace and the interaction with other people – the whole day can be filled with challenges.

Whilst employers are becoming more aware of the importance of equality in the workplace in the form of disability, there is still one area of disability that many employers are not exploring which is that of the chronic illness employee.

I don’t blame employers for not understanding how to support chronic illness employees in the workplace. I don’t understand it myself either half the time. Living with chronic illness and in particular living with ME/CFS is unpredictable at the best of times and makes planning a normal working week next to impossible. That’s why reasonable adjustments and flexible working are so important when it comes to chronic illness.

Flexible working can range from altering start and finish times, the number of hours you work and probably the most vital tool for people with ME/CFS the ability to work from home.

But what if you don’t have that option and you have to physically go to work? Whilst it would be lovely to sit here and say don’t go to work if you can’t the reality is that isn’t practical for some people no matter how much you want it to be. Whilst I am not working at this moment in time due to my illnesses there have been times when I haven’t had a choice due to finances but go to a workplace, and I know there are many people who are in the same boat.

My top three tips for supporting yourself in the workplace (if indeed you can make it there)

• Be honest with your employer – This has always been something I have struggled with since becoming ill – when and if to tell an employer. Should you tell them on the application form? At an interview? Or three months in when you are having an unbearable flare up? The truth is the choice is entirely yours, but being honest with your employer isn’t something you should shy away from. The more honest you are the more you can communicate your needs. Sell your skills as well as your limitations and show that there is more to you than being an illness. This way it is a two way street of what you can give them as well as what you need them to give you. If you become ill whilst in work then you should make your employer aware sooner rather than later to ensure you are given the support you need as soon as possible.

• Read up on your company’s disability policies – All companies should have policy and procedures which should include a disability section. Read it or get someone you trust to read it and familiarise yourself with it so you know your rights within the workplace. Find out about policies regarding flexible working and highlight any areas relevant to you. Once you feel you are prepared request a meeting with your manager, (taking in a witness if needed to help you record notes). Discuss what reasonable adjustments you are entitled to showing them the policies you have read.

• Contact HR – If like I did you found your manager isn’t listening or keeps delaying any support you are entitled to contact your HR department. As a disabled employee you are entitled to reasonable adjustments including occupational health assessments and your HR department will know this. Remember to keep detailed correspondence between yourself and anyone you speak to not only to act as a reminder, but to keep as evidence for future reference.

So here you have it my experience of becoming ill in the workplace. There is no doubt working with chronic illnesses is a tricky affair, but so is living with them. The important thing to know is all workplaces are different and they offer different experiences, but that doesn’t stop you exerting your rights. Don’t pressurise yourself to work if you are not in a place to do so, but equally if are able, (or have no choice), speak out about your needs. You are no less worthy of your role than the person next to you, illness or no illness.

If the topic of working is of particular interest to you keep an eye out for my upcoming posts on benefits, employment (with more specific tips in the workplace) and career changes.

Update: You can now read my workplace tips post here