How I Found a Way to Work Despite My Chronic Illness

To look at me is to look at anyone else. I look like a typical 40-something with the confidence you would expect of someone who has been in her profession for 25 years. If you are talking with me, you would likely also make the assumption that I hold down a full-time job. Like everyone else who looks and sounds a bit like me. Except, I can’t.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

I share my life with a chronic illness.

What you don’t see is the invisible chronic thing I now share my life with. The thing that’s so damn hard to explain in terms of how it impacts me and why it does what it does. The thing that means the go-getter has had to change her tempo and do things so very differently.

Jobs don’t exist for people like me.

If you dig a bit deeper, I will probably end up looking very different than your version of “normal.” And when you do dig a bit deeper, you might then write me off as being able to do a “normal” job? Because jobs don’t exist for people “like me.” Do they?

Managing the stigma.

Over the last three years, I’ve learned that having an invisible illness means I need to be very open and honest about what I can and can’t do in order to manage the bias that exists and the resulting expectations people have of me. And yet, in being open about my condition, it invites me into the same house of stigma that exists for anyone else managing a chronic illness. That I’m no longer able to hold down a “normal” job.

But what is “normal?”

The need for a different existence is increasing. Nearly half the population of Australia has a chronic illness. America has similar statistics. And stress is playing a major factor in those numbers. It is known to contribute to autoimmune disease and is certainly a factor in precipitating health issues for those with flaws in their genetic makeup. Overwork and burnout are percolating increasing numbers of chronic health conditions. Yet the source of that burnout  – employers  –  are failing to provide opportunities for those seeking more flexible work prior to burnout being reached or at the point those people seek to reengage with the workforce in a reduced way. People with chronic health conditions are simply put in the “too hard” basket. We don’t fit with the image of productive, working machines that seems to have been so readily applied.

Working with an illness is possible.

This illness of mine will make the rest of my life different. How I live it. How I work it. It will also make it difficult. But it doesn’t make it impossible. My illness means I can only work a few hours a day. I’m unable to be upright for too long or talk at length or be in stressful situations. My blood pressure modulation and adrenaline function is shot due to a genetic condition, Ehlers-Danlos syndrome. Yet I still crave social interaction and mental stimulation. I still want to make a contribution. My brain still works like it used to but it’s just sitting in a body that’s started to flag. So, in a world of busy, full-time working sameness, I had to get creative.

It was time to get creative.

The only roles I’ve found that best suit my predicament are multiple ad-hoc freelance roles which give me the intellectual stimulation I need and where I can control how much of me I give, without repercussion. This, I’ve come to learn, is called portfolio working. What is that, you might ask? Well, in the absence of employers making enough flexible work moves, workers have taken the controls themselves. A portfolio career is working for a cluster of employers in any combination that works best for the person. Where necessity, but also choice, is the engine room. What does portfolio working look like? For me, it’s currently this:

• Five different employers or clients
• Seven different email addresses
• 10 hours per week on activities that vary from support tasks to coaching to advising clients on change strategies
• Development of my own projects, e.g. writing posts like this and designing new business ideas in my field of expertise

A good deal of what I do is working from home, balanced with self-care. Self-care is taking rests when I need them, such as ensuring I take breaks from too much upright, chit-chat or busyness. Self-care is also spending quality time with my family. It’s ensuring I’m not zonked out because I over-revved my body too much. Self-care is me largely being in control of my day. Portfolio working gives me that  –  freedom to choose who I work with, how much I work and where/when I work.

Electing out of busy.

It’s been a windy road and has taken me three years to land here. It’s taken that long to offload 20+ years of brainwash that being busy is cool and anything less is just not the done thing. For me, being busy was an extremely ingrained habit that only a supertanker could stop. That supertanker was my health. Three years later, with a body more under control and a completely rewritten life, the buzz in my head has been replaced with a more peaceful, paced, easier-going existence. One where I have more opportunity to think and explore my creative abilities. One where I have been able to live life more on purpose.

Life feels exciting again.

I am happier than I have ever been, despite living with a body that has some limitations and the financial constraints that can come with my predicament.

Call to action.

Getting here hasn’t been easy with a health condition in tow. It wasn’t made any easier by the complete dearth of employed roles available for someone like me. The response from employers to deal with the growing tide of flexible employment needs is underwhelming. Diversity is a much touted discipline but there is simply not enough that employers are doing to deliver on it. There is a sea of talented people looking for flexible work who all have the ability to contribute in some innovative or productive way. These people may have a health condition and/or could be looking to better manage their family commitments.

What is clear is that health and wellness are prevailing in decisions made about work. Employers need to get smarter about what working contribution and participation can look like. We need to lose the assumption that full-time employment is the only way. It takes real determination to explore new ways of working to better suit our changing times and circumstances. Workers are already starting to adapt and lead the way.

Let’s not close our minds to all that potential.

This post has appeared on The Daily Manic and Thrive Global.