Until the past month or so, I’ve never really had to manage my chronic illness in a workplace setting, aside from the odd day where I’ve needed to go home due to a migraine. Essentially, my chronic fatigue/fibromyalgia has been in remission, allowing me to function like, and therefore pass as, a normal person.
Now, I’m managing a significant flare up of my chronic fatigue/fibromyalgia which is impacting my ability to do my job. In May, following an episode of acute pain and a trip to emergency (refer to I Don’t Know How This Story Ends for more details), I had a week and a half off work. Since getting back into work, I’ve been working at reduced capacity – shorter days, more frequent sick days, checking out for a couple of hours of an afternoon to have a nap.
I am doing the majority of my work from home because this allows me to have that afternoon nap and manage the myriad other symptoms my chronic fatigue/fibromyalgia is throwing at me – near daily headaches, random bouts of nausea, legs that feel like jelly and so on.
While my illness is still invisible from the outside, my manager, director, team, HR and even the head of the Government department I work for now know that I am unwell, although the extent of their knowledge of my illness varies.
I have been incredibly lucky that I have felt and received nothing but support from my workplace since the flare up. They have been responsive to my needs, flexible, keen to do everything they can to support me.
In contrast, a cruel new voice has emerged in my mind. You’re unreliable, you’re not working hard enough, you’re a burden and you’re not pulling your weight, you’re a liability, you’re letting your manager, director, team and/or department down…
Given how supportive my workplace has been, it clearly isn’t the source of this messaging. Instead, it is an indication of some pretty serious self-stigma and my internalisation of cultural narratives that valorise hard work in the form of long days in the office, never taking a sick day, always taking on additional work when it is offered and so on.
The simple truth is that these cruel thoughts are false but it’s easy to start believing them when they’re repeated over and over again. By writing them down, I can see them for what they are, interrogate them, rebut them.
Cruel thought #1 – You’re unreliable
The fatigue and other symptoms I am dealing with make it hard for me to commit to things as I would have previously because now there is the wildcard that is my health. And so, the voice tells me I am unreliable. It lambasts me for being unable to attend a meeting, or having to postpone something, or having to join online instead of in person, or not being online when someone needs something from me.
But what’s really unreliable is my health. I am doing everything I can to manage my chronic fatigue/fibromyalgia, but management strategies for this illness are far from perfect, so my health remains unpredictable. For some reason, I have taken to pinning my health status on myself, seeing it as a reflection of a flaw in my character as an employee. The very fact that I am doing everything I can to manage my chronic fatigue/fibromyalgia points to a very different reality. Why am I so committed to managing my illness? Precisely because I want to be as reliable as possible.
So it’s not true that I am unreliable. My health is unreliable at the moment, despite my best efforts, meaning sometimes I have to cancel/postpone/alter the format of a meeting and sometimes I can’t respond straight away. This doesn’t make me unreliable. I am as reliable as I can be in the circumstances.
Cruel thought #2 – You’re not working hard enough
Working incomplete days and taking more frequent sick days gives the voice further ammunition. The voice equates presence with productivity, even though I know this is a false equivalence. And so, the voice tells me I am not working hard enough. The voice tells me to push myself harder, to stop making excuses.
Perhaps my ability to just churn out the work has been diminished somewhat, but I was starting from a place of “phenomenal output of high quality work” (a senior colleague’s words not mine). Even at reduced capacity, I am still getting a lot done. And on days where I work from home (at least half of my working days at the moment), my productivity tends to be significantly increased as there are no external office distractions to contend with.
In the hours and days I take off work, I am exhausted and most likely to be found in bed. Rocking up to work in that state, even if that just means sitting down at the computer at home, doesn’t help anyone. I don’t get much done because I am battling the brain fog that comes with fatigue and I set myself up for more hours and days of the same. So, it’s not only better for me and my health, but also for my organisation, if I heed the messages my body is sending and take the hours and days off that I need. There is no inherent virtue in being present and presence certainly doesn’t equal productivity.
Cruel thought #3 – You’re a burden and you’re not pulling your weight
It is now rare for me to be the person who takes on additional work when it’s going. Sometimes, if I am unwell, someone else in my team has to take on something that I would normally do. And so, the voice tells me I am a burden and I am not pulling my weight.
But it’s not that simple. For one thing, I am managing a project which has hit crunch time. Final delivery is scheduled for August, but factoring in the lengthy clearance processes inherent in working for Government means the bulk of the work need to be completed by the end of June. So while my somewhat reduced capacity may be part of the reason why I am not the person taking on additional work, I am also working on an important project which requires pretty close to full-time focus from someone and that someone is me.
Also, is this not the purpose of teams to share the load? We’re in it together, we step in to help when someone is unwell or has too much on their plate, knowing that when that person is us, our team will reciprocate. I’ve taken on additional work and stepped in to help plenty of times in the past, now it’s my turn to be helped. Problem is, I’m not very good at allowing people to help me. I’m very attached to this idea of myself as self-sufficient and independent. Being unwell requires me to let go of this and accept help, but this has been, and continues to be, a challenge!
Cruel thought #4 – You’re a liability
Experiencing illness has meant I have had to draw on my department’s resources by taking sick days, getting properly set up to work from home and so on. And so, the voice tells me I am a liability. I am a drain on my department’s resources.
People get sick. Organisations know this and they are set up, or they should be (I am lucky mine is), to support their employees through such things. They are set up to support their employees through illness because ultimately, by supporting you through illness, you hopefully get well again, which is not only good for you but also the organisation. And yet the voice makes me feel like I don’t deserve any support from my employer through this period. People are allowed to get sick, but apparently I’m not allowed to be one of them. I am criticised for taking sick days – instead of being paid for my work, I’m being paid to convalesce, and out of the public purse no less. I am criticised for the fact that my manager, director, team and other members of my department have had to dedicate time to attending to my needs instead of their work (part of their work is attending to employees’ needs, but the voice wants to ignore that).
Basically, I am criticised for any way in which I am drawing on my department’s resources rather than contributing to them. In doing so, I apparently render myself an unacceptable liability, even though I wouldn’t see anyone else experiencing illness in the same light.
Cruel thought #5 – You’re letting your manager, director, team and/or department down
The chorus of you’re unreliable, you’re not working hard enough, you’re a burden and you’re not pulling your weight, you’re a liability, culminates in this overarching sense that I am letting my manager, director, team and/or department down. This sense of letting people down is particularly acute because my illness is an existing condition which I have learnt to manage over many years. If it’s something I have learnt to manage, this flare up must be a reflection of poor management on my part and, therefore, my fault. By experiencing this flare up, the voice would have me believe I am a disappointment, a failure.
But this is not my fault. Sure, as I mentioned earlier, there are some management strategies for chronic fatigue/fibromyalgia, but these are far from perfect and there are so many other factors at play. Really, I’m just human. Illness is something that happens to humans and employees are humans. I’m don’t think you can let people down just by being human.
So, perhaps my work life looks a bit different to normal at the moment. Perhaps ability to commit to things and my productivity are somewhat diminished at the moment. Perhaps the balance of what I am giving versus what I am taking from my team and department is weighted differently to normal, towards take rather than give. There is good reason for this – I am unwell. But the voice has no compassion for this, makes no accommodation for this, and holds me to the standards of a perfect employee. Not just the standards of a healthy employee, a perfect employee. So it’s no surprise that I am failing to meet those standards – we probably all are. I am doing the best I can in far from ideal circumstances and this is all my manager, director, team and department ask of me.
Love, hope and peace from Emma.