I wrote before about how I ignore, or cope with, the day-to-day pain and isolation of illness. But there’s another big casualty of my illness – my career. I’m sorry if you’re reading this and you’ve had to stop work entirely due to illness, or if you can’t find suitable work. I don’t intend to sound ungrateful for the stamina and luck that I do have, which mean I’m able to continue working. I love going to work.
But I haven’t got the career thing sussed yet. It feels like the longer my illness goes on, the bigger the gap between me and peers my own age. But there are a few things that I’m conscious of, which have helped.
Within the office
Knowing my limits
I’m fortunate enough to have a reasonably flexible job, which can fit around my needs for rest. Because mornings are bad in terms of symptoms, and peak travel is prohibitively expensive and more dangerous, it’s understood that my day won’t start before 10.45am. The longest I can manage is around 6 hours in the office, so that means I’m never tempted to go over, because by 5pm a lot of people are packing up to go home. I know I need to stop and have lunch away from my desk. So I do that.
Getting everything I’m legally entitled to, and standing up for my rights
Access to Work provided me with an OT assessment, then a whole load of equipment and training, which mean that my desk is as comfortable as it can be. The step-change between coming home with agonising joint pain and headaches, to leaving work feeling tired but not aching, was amazing. If your furniture hurts, get your employer to change it.
With training courses, I’ve had to fight for them not to assume a 9-5 day is possible for me. The extra brain needed for studying makes them particularly exhausting, so I’ve pushed hard to get the most important sessions between 11 and 3. HR totally back me. Still, a lot of team and whole-office meetings start earlier than I can safely get to work. I’ll change the culture gradually.
Ignoring the “work martyrs”
Every office has them, the person who gets in early, stays late, and eats lunch while in a meeting. The ones who try and guilt-trip parents for leaving in time for the school run, who insinuate that part-timers are “lightweights”, but seemingly have enough time in the day to gossip and disrupt everyone else. They’re obvious by comments like “I was up til 10pm working on this report”, rather than “I’ve worked hard to make this report really good”. I do my job well, in the hours I’m paid to, and I’m happy with that.
Letting it go
To misquote the song, “the correct use of grammar never bothered me anyway”. I do a lot of comms for our team, and subedit important reports. If I were full-time, it would bother me that there are pieces of work leaving our department that would have been better if I’d had a hand in them. But I can’t do everything. It’s about picking which things it’s worth expending energy over getting perfect, and which are “good enough”.
Outside the day-to-day
Professional development is pretty tricky if it relies on investment outside of working hours. For me, they’re broadly accounted for – it takes all the strength I’ve got to keep on top of essentials, like laundry, washing most days, eating, rehab exercises and rest. I can do 16 hours in the office, and maybe another one outside of it if I’m particularly healthy that week. So:
Conferences and networking
Full day-conferences are out of the question for me, given the concentration required, and the effort of travelling there and back. If one was particularly good, I might make an exception, but it’d take out 1-2 days each side of it with rest and recovery. So the ways round it are;
- attending, but only for a bit – if there’s actually one session I care about, I’ll just go to that and come home.
- attending, but skipping seminars to save concentrating on them – at a recent women’s day I did the morning seminars, but spent the afternoon painting and chatting, and skived.
- not attending, but catching up afterwards – most people do podcasts, or if not, a coffee with somebody who went is less stressful than a crowd.
- attending remotely via the internet – asking for a live-stream in advance, and following on twitter makes it almost as good.
Reading the background material
All the think tanks, and any organisation worth listening to, will be publishing papers at an alarming rate. I just make sure I select the best ones to invest in reading, then have one with me at all times. I never know when my brain will have a brief moment of lucidity and I can cram in another few chapters. Then everybody’s on social media, so it’s easy to ask questions. This is really easy to do even from in bed, and sometimes they’re based on a lecture series, so you don’t even need to strain yourself doing reading. It helps me feel connected to my sector, even if I’m hardly ever there.
Being realistic about new jobs
Previously, I’ve upped sticks and moved where the work is. I’m single, I have nothing to hold me here. But now my priorities revolve around having a landlady who will cook for me, a GP who knows my case, a hospital with a good consultant. Friends are ten minutes away, and the area is quiet and calm. I’m here to stay. So a new job would have to be reasonably commutable from my home, and as I mentioned at first, flexible and part-time. There’s a minimum salary I’d need before 40% of it was enough to live off.
In addition, it’s really helped that my current boss has a family member with a similar illness, and some people in my team really “get it”. My work is interesting, and I’m trusted just to get on with it – there’s wiggle room for good days and bad days. Until recently, nobody had been patronising, and friends at work do seem to care about looking out for me. It helps that I was there for a year before I got ill, so the colleagues who’ve been around longer can remember how good I was then.
But it’s still a bit depressing
Going part-time means a lower salary, so it’s harder to socialise generously with colleagues. I’m living off really very little income, and have to budget for things like wheelchairs, rather than holidays. Being around so many able-bodied people is a bit of a kick in the teeth, particularly when they ask, blithely, “what will you get up to on your day off”, or “how was your weekend”. Watching them get married, have hobbies, talk about kids growing up, overtake me and take on new responsibilities in the office, is all difficult when those things aren’t happening to me.
I’d love to take on more responsibility, to be challenged at work, and to have more expected of me. When I first got ill, my boss, bless him, said “yes, this job is beneath you, but it’s only temporary, because you’ll get better”. We’re having to adjust that expectation, and I can see it frustrates him equally – he’d love it if I could work full-time, because I’m good at what I do! I’d also love to see any jobs advertised as part-time which looked like they’d stretch me too, there’s not a lot out there. But it’s hard to take on more responsibility when my ability fluctuates so much week-to-week. So for now, things are looking stagnant, and I’m waiting to work out how to make that ambitious next step while living within the constraints of chronic illness.