It’s 8am on a Monday morning. I’ve had ten hours of sleep, a strong coffee to kick start the day and a cold shower to get my blood pumping before heading to the office.
It’s 12pm on a Monday afternoon. I’ve been staring at my screen for three hours unable to get any work done. I think someone noticed me taking painkillers again. My heart is racing from my third coffee of the morning – I just need to stay awake. If I ask to go home it’ll be the fourth time this month and I can’t risk it.
It’s 2pm on a Monday afternoon. I’m hiding in the toilets again. I’m resting my head against the cubicle wall, using my jacket as a cushion. God it smells in here but a half hour nap might get me an hour of productivity. I hope no one catches me this time – I can’t afford to lose this job.
Welcome to what a 9-5 job looks like when you have chronic fatigue syndrome.
There are 15 million people in the UK with a chronic condition (over 20% of the population) – a condition that can’t be cured and only managed – and despite the 2010 Equality Act outlining that employers should make reasonable adjustments for staff with long-term illnesses, in practice this often isn’t the case.
My story isn’t considered shocking in the chronic pain community and as a result myself, and many others, have turned to going freelance or running our own businesses to take charge of our health.
Where other businesses can’t handle our conditions, we can create our own businesses or freelance careers that can.
These are our stories.
Briony Cullin, a freelance digital marketer in Glasgow
I have Crohn’s Disease, which is a type of inflammatory bowel disease.
When I was first diagnosed, I’d not long been in my first full time job working at a law firm which was difficult – not helped by the fact that our office was tiny so there was no way to hide that I was going to the bathroom all the time!
I had one job where I didn’t tell them about my condition because I worried it might affect me getting the job, which was also when I was the sickest.
It was so hard to get to work every day – I’d previously had a job which was about a 30 minute drive away and I’d often have to stop one or two times on the way to work to go to the bathroom. By the time work started at 9am, I was already exhausted.
I got a job working for an internet company based out of San Francisco, which meant I worked full time at home and it had such a huge impact on my health. I hadn’t realised the stress that getting to work was causing me.
After working for the internet company for nearly four years I knew that working from home was much more suitable for me so I took up freelancing – I find being able to work around my energy levels and hospital appointments makes me a lot happier and productive.
I also like being able to work a split day – sometimes I’ll work from 7am – 2pm, and then take a break for a few hours and do some more work in the evening.
I track my work time so know I’m a lot more productive (and efficient) for being in the house rather than spending my energy on commuting.
Charlotte Ann Dougall, business owner and freelance digital marketer, Blether Digital
The condition that impacts me most is endometriosis, meaning that tissue called the endometrium grows in places it isn’t supposed to.
I was mostly ok on a day-to-day basis, but I got tired easily and struggled to keep up with the long days that my job at the time required.
When I had bad flare-ups, I was so scared of not being taken seriously that I forced myself to go into the office even when I was in agony, which ended up doing much more harm than good. I was going to bed as soon as I got home, dosed up on heavy-duty painkillers, and sleeping through my weekends.
I was denied flexible working opportunities, such as working from home when needed, and often had comments made about my absences due to sickness.
I could tell that I wasn’t ‘believed’ about my invisible illness, and it was quite demoralising to be treated this way – I worked in digital marketing, and my job very easily could have been conducted remotely.
The final straw for me came when I was unfortunately caught up in a car accident while travelling as a passenger in a taxi, and my boss was incredibly unsympathetic, asking me to come into work when I was in a neck brace. That was my breaking point, and I handed in my notice the day my sick line was up.
Now that I work for myself I can get so much more done, because I can pick and choose when I feel best placed to work. I can work from my couch or my bed if I need to, and if I have an unexpectedly bad day I have the opportunity to rearrange my commitments for when I’m feeling better.
Being able to slot my work in when my energy and pain levels are manageable means that I’m no longer having to spend my weekends sleeping, and I can balance things so much better.
Sonya Barlow, founder of Like Minded Females
I have chronic migraines that cause me to be unable to do anything for anywhere from 24 to 72 hours at a time.
I had to hide my condition at work, especially because when I told my colleagues or managers they didn’t believe me because on the surface I ‘looked fine’.
I would go to the prayer room to sit in the dark or move myself to a dark meeting room with no lights in order to get some work done.
In my next two jobs I kept it a secret because I was afraid it would either be used against me or as a reason to demote me.
There have been times I’ve had to be escorted home from offices by friends or my partner, because it’s unsafe for me to go alone in moving tubes or trains, due to the sheer volume of people, noise and triggers.
Unfortunately, with chronic migraines and mental health there is still a lack of education and most employers believed I was making it up because they couldn’t see it on the surface. I found myself both isolated and miserable, which wasn’t the way for me to live, especially as it directly affected my triggers.
Now that I work for myself from home I am so much happier and saner – I have never felt so free or able to manage my health issues. I now plan my day accordingly, so I am able to exercise, eat well and take regular breaks.
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