I was born with a body that would have found itself better suited to being a woman in the olden days.
Granted, only if I was a rich, white woman.
The kind where my job was to be erudite, read, swoon and occasionally go out for tea.
Unfortunately (well, I mean, really not, but you know what mean), I was born in 1988. And I have a brain. And ambitions. And live in a society where those things are appreciated and encouraged. Woohoo!
This means that I have to work. And I’m not complaining, I want to work. More than anything else.
In fact, the biggest thing that I have been struggling with recently is feeling like I am not living up to my unfulfilled potential, and no matter how hard I try, there’s nothing that I can do to overcome the limitations that my body puts on the time I can spend on achieving those things.
Over the years, I’ve learned that being honest about my health conditions upfront is really important. I’ve had to leave more jobs and internships than I can count because I would push my body too hard in an attempt to work a ‘normal’ work day (and in some cases totally a abnormal, ridiculous workday), and then suffer from a really severe flare up as a result. After that I’d literally be unable to do nothing for months on end.
Now, I’m doing way more than I ever thought I’d be able to.
I have a “if you want me, this is what you have to deal with” kind of attitude. I’m lucky that I have enough experience behind me to be able to do that (and this is a big thing that I’m working on with my charity, Project Chronic), but being open and honest about what things employers can do to help you work is one of the most important lessons I have learned over the years.
That being said, we must recognise that there are two sides to this. On the one hand, we are entitled to fair and reasonable adjustments. On the other, employers have a job that needs doing and if you’re not well enough to do it, there’s only so much that adjustments can do.
The type of work that you do and the type of company that you work for plays a huge role here. For example, when I was at Virgin Unite as their Entrepreneurship Content Manager (or Guru as I was called), I was able to work flexibly and remotely, getting Access to Work cabs in once a week for a few hours of meetings when I was up to it. We had weekly meetings where we monitored how my work was affecting my health and scale back and get more support when necessary.
I totally get that not all companies are willing or able to do this. In fact, I was at a point back then that I had still pushed myself too much and I ended up having to go on sick leave for 8 months – even with those adjustments.
I now don’t apply for jobs that I know I won’t be well enough to do, because I know that even with adjustments, anything that require being ‘in person’, having lots of set-time tasks and meetings, means that I’m able to have less control of my schedule, and that I’ll burn out really quickly.
Because of this, I haven’t applied (in the traditional sense) for a job in years – everything has pretty much been recommendation or word of mouth (which has been helpful because it means that it’s easier to explain my situation).
If I’m being totally honest, most of the work that I do these days isn’t exactly the ‘dream career’ that I thought about as a teenager. I’m not exactly made for sitting behind a computer all day. The work that I love and that I’m passionate about is the stuff that I work on in my spare time – the stuff that I feel makes an actual difference. It’s hard because right now my ability to focus on those things is significantly diminished by using my energy on paid work – and that includes writing about chronic illness. I can’t tell you how bad my writer’s block is right now – so I apologise if this is horridly incoherent!
When you have a chronic illness, your life is made up of compromises.
I have finally got to a place where I have found ways around my health – so I can work from my bed, a few half days a week, behind a computer. I get paid to write, create websites and manage social media (hire me!). These are skills that are transferrable, and really conducive to having to be sensible about how I use my time. I recognise that I’m really lucky in this sense – and that I have a family and friends that support me so I can work as much as I do.
The way I look at it now, is that my rest time is part of my working week. For every ‘on’ time I have, the ‘off’ time counts as part of my job. Unfortunately, it’s unpaid. The jobs that I take on have to be financial/time efficient, otherwise the physical payback won’t be worth the financial gain. Again, I’m lucky to be in this position, but I have worked really hard over the years to get here, pushing myself way too hard in the process.
And hey, it’s not easy. I’m not that great at sticking to those rules, even now. I generally work on a million random projects instead of resting, but it’s a start, and I do try to make sure I have whole chunks of day to rest several times a week away from client work and being contacted by them. My rest times and evenings are non-negotiable And at the very least, I close my eyes and try to take nap breaks quite regularly!
Stop. Tashy Time!
Whenever I work with someone new, I let them know from the beginning about my health problems, and that if they want to work with me that there are things that need to be taken into consideration.
Essentially, the work will get done, well, and to deadline, but how and where I work must be totally up to me. This isn’t because I’m lazy or bossy. It’s what will allow me to do the best job possible. And this is key.
Even though I have been pretty strict about this for years, I fell foul to the “I really want to impress and do this job and so when they asked me to come into the office and work a few times a week – even though we’d initially agreed remote work”, I slipped up. And I tried to “work work”.
I failed badly. I buggered up my back so much that i am still recovering from it months later. I got so unwell, I could barely function. I ended up having two full-on breakdowns in the office and it was only then that it seemed to be understood that I needed to work from home.
I shouldn’t have let it get to that point. But that desire to do what everyone else can. That simple act of going to an office for a few hours seems so small. But it’s not.
Because here’s the thing. When you have control over the things that you do in the day, it’s amazing what a difference it makes to your ability to do things. It even surprises me. I could work all day on my computer from home, but send me to an office and by the time I’m there, my fatigue and pain levels would be so high, I might as well have not worked that day and it will knock me out for a week.
Finding the confidence to say “no” is so difficult. And that can only come with time and practice, and knowing that you can do as good a job as anyone else, you just need to work in a slightly different way.
It’s part of the whole ‘accepting’ your chronic illness but not giving into it thing. There will be times when your body flares so much you can’t work – I get that. But finding ways to keep your life as consistent and controlled as possible may help to stop these from becoming more frequent.
It takes a long time to figure this stuff out, and there’s still (sadly) very little understanding and opportunities specifically targeted as flexible enough for people with chronic conditions. Keep writing, keep shouting, keep sharing your experiences. Things will change.