Reimagining work with chronic illness

It's been a while now since I've come out of denial about my illness. I've had some time to at least begin to grieve the losses that have come with it. Friends, family, future plans, hobbies... my loss list is long and detailed. I have also been able to receive some gifts from my illness - it's not all loss. But the gifts don't make the loss any less real, any less difficult.

One of the bigger things I've lost is my ability to be gainfully employed. I haven't been able to work even part time in over two years. All the shame, judgment, and social implications aside, there is something that feels degrading about having my daily purpose and to an extent, my financial independence stripped away. These have probably been the hardest for me to adapt to. And yet, adapt I must and I will!

Looking back

If I'm honest about it, I have never been able to sustainably work full time. The only time I did so was during my first two summers off university. I returned home from school in Vancouver, and worked as a temp (administrative assistant) at the university in Saskatoon, filling in while their usual admin assistant was on holiday for about a month each summer. I had to work from 8:30am to 4:30pm, Monday to Friday back then. I think I was still used to it enough after having 8:30am starts during high school, and was able to push myself through it. Luckily the actual workdays were very low key and low stress, doing things like fielding phone calls, typing up memos, sorting mail, etc.

After those first two years, I started attending year round because I had to take fewer classes per semester than a student typically would. I just wasn't able to keep up with a full course load, so for the 3rd to 5th years of my undergrad degree, I took 3-4 classes for 3 semesters a year, instead of the usual 5 classes for 2 (with summers off). I avoided early morning classes like the plague, as I felt really sick in the mornings and would just end up missing loads of classes.

Grad school was even more flexible schedule wise. Though I was a TA (teaching assistant) my first semester, teaching tutorials was a nightmare for me with my health issues, so after that I managed to secure one of the very few TM (teacher marker) jobs in my department, which alleviated me of tutorial teaching duties. I muddled along, working at home a lot, and it worked for me.

After 3 years year round, I finished my Masters, and by then I knew that academia was not my bag. I did a bit of freelance work helping with some webdesign, and then worked part time at the Boys and Girls club where I'd been volunteering - that did not last long though. Working with kids was way too draining for me, even part time. 

Finally, about 6 months after finishing my Masters, I applied for a couple jobs doing web related work (one for a budding progressive news site, and one at a web design firm). I was having no luck finding jobs related to my degree (urban planning, health policy, etc.), and thought my tiny bit of knowledge of Drupal and coding CSS and HTML might be enough to get my foot in the door. Indeed, it was.

I started working at the web design firm 9-5, 4 days a week. It was one of the most physically depleting times of my life. 

I ended up getting sick a lot. Not just flares of my chronic illnesses, but also a lot of viruses and bacterial infections, including a persistent respiratory infection that I. Just. Couldn't. Shake. (This respiratory infection that lasted 8 months, and the antibiotics I took for it degraded my health permanently, I have never regained my "normal" from before then.) My health tanked like crazy, and after a year and a half there, between my relentless illnesses, and a few other things I wasn't happy with at the job, I gave up and quit. I knew I'd never be able to catch up all the sick time I'd taken. I knew I couldn't keep up working that schedule. It was not sustainable for me, and I had to admit that and move on.

I took six weeks off to try and recuperate from the respiratory infection (which I did partially), before getting in touch with someone who ran a different web development company in town, that I thought could be a good place for me. I was offered part time work for the company, and was thrilled that the job would be fully remote - ie. I'd be working from home! 

DrupalCamp Vancouver 2008, me and co-organizer DaveO
Me and one of my conference co-organizers Dave (coincidentally also now chronically ill) crashed on the couch feeling super worn out, at the end of DrupalCamp Vancouver, 2008

Of course, nothing goes as planned, and a couple months later, the company got offices... Though it wasn't mandatory for me to be there in person on a daily basis, there was pressure to be there at least some of the time. It wasn't what I'd signed up for, but I felt like the job was worth sucking it up for. It was a good job with a great group of people - I stayed for 3.5 years, but it slowly and surely wore me down more and more... It probably didn't help that I spent a ton of my "free time" volunteering doing Drupal community work, and organizing and attending conferences. I took almost no actual holiday time during those years.

Pm BoF 2
Photo by Gregory Heller, me running a BOF (mini-conference session)
in Seattle, while feeling like crap, 2009

I was typically working anywhere between 20-30 hours a week, depending on the projects and workload that the company had at the time. I was constantly exhausted and sick. I don't know how I carried on as long as I did. Looking back, my chronic health issues, and namely adrenal fatigue, were severely impacting my ability to cope emotionally and physically with work, and my outlook and attitude about the work I was doing was plummeting. It's hard for me to admit this (and I'm not sure how well I hid it at the time), but I was becoming a very short-fused, anxious and also angry person - and that is not me, but that's what chronic stress and chronic illness were compounding within me to become.

Me at DrupalCon DC napping at the convention center
Me napping at a convention center in Washington, DC, 2009

For various reasons, certainly fueled by this underlying struggle, I decided it was best for all of us that I leave my position at the company. I don't think I even fully understood why I needed to do this at the time, but as much as we (my boss and the other most senior member of the team) tried to figure out how to make things work, it just seemed like things were too far gone for me.

me and nonsie sewing patches together for freya's blanket
At a conference in San Francisco, just starting to recover from a severe bout of illness,
I didn't go to a single conference session because I was so exhausted, 2010

Looking back, it's clear to me that I'd become entirely overwhelmed by the horribly unsustainable nature of the work on top of my health issues. I worked, went home, eat, slept - rinse and repeat. I was barely able to do just the bare minimum. I wish I'd seen it sooner, and could have taken care of myself better and prevented the inevitably crash, alas it was not to be. 

Drupalcon London
Photo by Boris Doesborg, me at a conference in London in 2011 - I was so sick this week that I barely attended any of the conference... and yet, still smiling!
Optimism or insanity, who knows?

I thought I'd take a couple weeks off then start freelancing, but by then it was already too late. And as much as I never expected to crash as hard as I did, or still be this sick over two years later, this is the reality of my life. There is a possibility I will get better. There is a possibility I won't. 

I included the photos of me from conferences during this time period because I think it's important if only for me to see myself FAKING IT. Acting like I'm okay, like I"m having fun, while destroying my well-being by continuing to push and act like I'm not extremely unwell. It's horrible and a bad habit I need to keep recognizing. 

Looking ahead

Having finally accepted my abilities and limitations, and having waited and not seen the magical healing I had hoped for, I find myself wondering how to adjust when it comes to work. No matter how nice it might seem in theory not to work, when you're not working because you're sick, it's no vacation. It pretty much sucks. Having a purpose, being able to pour yourself into something you're passionate about, being able to earn an income - these are things we take for granted, and they are an important part of our lives. 

I know there's no going back, both out of necessity, and shifting goals and passions. But I have been pondering for a while now whether and how to dip my toe back into paid work.

Sure, I love doing my art - I wish I could just do my art. But it takes time to make a name for yourself, and when I can only make progress very piecemeal and slowly, I can't expect to be able to make any kind of regular income from that for a while to come.

Thus, I've come back to thinking about ways to earn supplemental income. And that pretty much boils down to doing some kind of technical, editorial, writing, or online work. It's what I know, it's what people know me for, it pays well, it can be flexible. 

But I'll tell you this: I'm terrified.

The idea of having to be accountable and reliable when my body is so unreliable is horrifying to me. I am a perfectionist, and I have an impeccable work ethic. I want to be able to give everything I do 100%. But I can't, not right now.

I wonder if anyone will want my 50%... I wonder if I will be more trouble than I'm worth. I wonder if it will degrade my health trying to work again. If it'll be an fast and hard failure. If it will consume the little bit of energy I've been able to use for my art... this is a hard one to think about, it's still so new and I'm not willing to give it up. 

Who would want to hire someone who is sick and potentially unreliable? (Am I unreliable? I always did my work before, even when I wasn't up for it...but at a cost. I might end up sacrificing my health again...) 

The thoughts swirl around, the self doubt builds, the fear takes over. And I shelf the idea for months at a time.

The truth is, I don't know what the right choice is. I really don't. At some point, I am just going to have to either try it and see what happens, or decide to keep shelving it and figuring out the alternatives.

I've talked to a couple of other friends who've been through this, and I wish they could be a guiding light showing me the way. But the truth is, there is no easy answer and it's been brutally hard for them too. There almost needs to be a work co-op for people like us, so that whoever is well on a given day can pick up the work while the others are sick and need to rest.

Financial independence, validation, respect, self-worth - it's all tied deeply into our ability to be a productive member of society. And when we can't, a lot of life can fall apart, especially if you're not lucky enough to have a safety net of some sort. I've been lucky. But I can't see this - just not working - as a permanent solution.

Me, at peace, making art in my home studio, 2013
I want to maintain this elusive calm in my work life

Is it time to take the leap? I don't know. But it's been heavy on my mind lately. 

How have you negotiated working as someone who's chronically or mentally ill, or recovering from illness? I'd love to hear your thoughts.