How My Illness Forced Me to Leave My Job and Take Control of My Life – A Year in Review (Part 1)

I’ve been working on a couple of related posts around these topics for a while now, and delays and timing have led me to realize they’d actually make a good end-of-year summary of what was an amazingly turbulent time in my life, with loss, illness, and anxiety, all of which led to some personal and professional breakthroughs.

It’s been a weird year.

And since this write-up got pretty long and I had trouble finding anything I could let go of, I decided to go all Peter-Jackson-Hobbit on it and split it into 3 unnecessarily detailed parts. This is the first part.

Prelude

Two weeks ago I was laying in bed in a hotel room in Charlottesville, Virginia, my sleeping daughter curled up next to me, as I reviewed doctors’ notes going all the way back to my birth, and typed out a summary of my entire personal and family medical history for the geneticist I was going to see the next day. It was a lot of material.

My medical notes

This isn’t even nearly all of it.

But in the back of my mind was a nagging frustration – as a freelance consultant I was taking a break from mounting client work and deadlines, I wasn’t sure where my next projects were going to come from, and I was already several days behind trying to launch a new consulting product, with the hope that it would be the first step in evolving my business to the next stage. And instead of working on the product at the hotel as I had planned, it was playing third tier to both preparing for my appointment and feeling physically, mentally, and emotionally exhausted. As usual.

This is what it’s like to be sick and start your own business.

My Second Job

The next day I met with the geneticist at UVA, and I was officially diagnosed with Ehlers-Danlos Syndrome (EDS) – a genetic collagen-production issue. Turns out our bodies really need collagen, and the lack of it can seriously affect your joints, skin, muscles, blood vessels, organs, and nerves. I’ll write more about the diagnosis and what it means for me in a later post, but to summarize the impact – it’s a breakthrough for me. I had suspected this condition for years now as the likely cause of my dysautonomia and a lot – possibly all – of the loosely related problems I’ve struggled with for most of my life. I finally have a real answer and understanding of the problems that have plagued me, and probably much of my family.

The diagnosis itself won’t lead to any immediate changes – EDS itself is not curable or even directly treatable. But having the diagnosis will provide valuable context while treating the various symptoms and problems it has caused. And it’ll hopefully help the rest of my family, including my primary reason for going – that little girl sleeping next to me. And that’s crucial, because I don’t want her to have to go through what I have, both physically, emotionally… and professionally.

I had an epiphany a while back about my illness that provides a great metaphor for what I’m dealing with, and what I’ve struggled with for years. First, a relevant story –

Soon after I started my last job a few years ago, the company hired a project manager to oversee our development team. After starting his employment he would regularly not show up for work, keep minimal hours, and suddenly leave without warning, all the while giving questionable excuses, from illnesses to multiple deaths in the family. It turned out later that he had never actually quit his other job, and was trying to work both of them. I’m not making this up. It was ridiculous once we realized what was going on, but it was enlightening to me to realize recently that I had ended up doing essentially the same thing, against my will.

Having an illness is a full time job. And my boss is an asshole.

Think about your work situation, and what it would be like to have another full-time job on top of that one, the hours overlapping with your normal work, or even pushing your main job aside without any consideration, while you deal with the unpredictable and unreasonable demands it puts on you. It doesn’t respect your “real” work schedule, your sleep schedule, your family time, or your days off. You have to explain this to your actual employer, who doesn’t understand your condition and might or might not be lenient enough in their business needs to accommodate these conflicting demands on your time and energy. That’s what working with a chronic illness is like.

An Unexpected Journey

For the last couple of years for me this challenge was exacerbated by the fact that my primary job itself was enormously demanding, that my employer fought all of my requests for accommodation, failed to work with me when I needed it, harshly criticized shortcomings that were a direct result of my illness, and threatened my job. It wasn’t just that I was overworked. I was sick, fatigued, struggling to sleep and to think straight, and most of all, seriously anxious and depressed. Medication wasn’t doing enough. I was working insane hours to make up for the time I couldn’t work. My family barely saw me – I was always either sleeping or holed up in my home office (or quietly stressing out to myself in private). I would drag myself away to come to the dinner table when I could, exhausted and anxious. As I struggled to provide for my family, I wasn’t really there for my wife when she needed me. I was missing my daughter growing up.

My daughter running away down the sidewalk

I considered some options for change and slowly tried to work on them over more than a year, from finding another job, to finding contract clients so I could possibly transition to freelance work, to creating some kind of product that I could develop into a business. But again and again I found that I just couldn’t find the time of day to focus or commit to anything other than getting by. After all, I was already working two full time jobs. I was underwater and couldn’t even reach the surface to find air, much less a boat that could carry me to safety.

So here I want to give a quick introduction to someone who’s become relevant to the changes I made this year in some rather unexpected ways – Amy Hoy is a product strategist, bootstrapper, and teacher, with an enormous following of people looking to improve their lives, frankly by kicking their butts into action and pushing people to recognize common sense in business.

And like me, she has dysautonomia and EDS. So her writing has had a big impact on me this year, for an interesting variety of reasons.

(Also we’re talking about Amy Hoy, so language warning ahead…)

I’ll cover this more in another part, but through a series of life-changing events and just reaching my breaking point, in May I finally reached what Amy calls a “Fuck This” moment. I was done. I had to make a change. I reached a point where staying in that situation just wasn’t an option anymore.

Ultimately I realized I just had to quit.

So with no other job offers, no clients in my pipeline, mounting medical bills, a mortgage, and very little money in the bank, I said “Fuck This,” put in 30 days notice at my job… and just walked out the door. I stepped outside and smelled the fresh air.

Leaving my job, walking out the door

Not seen here: the undercurrent of “Oh crap, what have I done?”

That was the day I stopped taking Xanax.

It was the scariest and probably the best decision I’ve ever made.

Next Time on Serial My Year-In-Review

In the next part I’ll talk about what happened next, how I climbed out from the bottom, and how I fell into starting my own business. I’m hoping it’ll be up tomorrow, but I can never be sure (see: everything above).

If you’re interested in getting notified when the next part is up, or following along on my journey as I share my insights into starting a business, web development, and coping with illness, please consider signing up for my mailing list below. I promise not to spam you, and you can opt-out anytime.

Update: Part 2 is now available.

 

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