Are You Working . . . for You?

I’ve lived with auto immune diseases and related conditions that come with this territory for 40 years. That’s plenty of time to learn a few things about what living with illness can do to you and what you can learn from this.

#1 on my Top 10 ( David Letterman‘s Top 10) Chronic Illness Life Lessons would be:  Engaging work gets me out of bed each morning, no matter how badly my body is screaming, no. 

Maybe because I already had a high degree of resilience when I entered the Kingdom of the Sick, being able to get up again while my body is taking the blows is critical to my well being. 

I’m know I’m lucky.  I’ve got family and friends whom I love and value deeply – they’re my sustenance. But my lifeline to resilience has always been work, the place where I become something more than a person with illness. The nature of the work can vary:  paid or unpaid, alone or on a team, virtual or in person. But to maintain resilience, the work must use my skills, provide a sense of value and purpose and most importantly, engage me.

This isn’t true for everyone, obviously, but I’m also not alone.  I haven’t come across anyone in my coaching practice who wouldn’t say the same thing: Working, in whatever way possible, at the least provides helpful daily structure, and at it’s best, provides a sense of purpose, competence and value.  It can also be an antidote to poverty.

Sad to say, too often work fails to live up to it’s potential.  But when it does, it’s a tonic for the soul. 

That said, there is no doubt in my mind that it’s especially difficult, and for too many, impossible, to continue to work in any capacity  while living with unpredictable, waxing and waning health problems. 

When I was 40, I was already living with multiple sclerosis when I developed ulcerative colitis.  As my health plummeted, I could barely get out of bed to take care of my family, never mind get to my job.  Forced to leave the workforce, I was unprepared for the deep hole this left in my life.  It wasn’t just the loss of my income. I lost routine patterns, my sense of self, the ‘normalcy’ that I was desperately trying to hold onto. 

As I became somewhat healthier, I wanted to return to work.  But I faced questions I’d never thought about before. I knew I couldn’t physically return to the career I’d built over 20 years.  But I had no idea where to go from there.  What could I do? Who would hire me?  What did I have the strength to do? 

I can’t count how many emails I’ve gotten from people with various chronic illnesses who want to leave employment to start their own business. No doubt, this seems like the easiest way to get the flexibility you need when you’re living with unpredictable, debilitating symptoms.  But if your life is already stressed to the max with challenge,  the purpose for change is to minimize what’s difficult and maximize what isn’t.  You don’t want to waste precious resources pursuing dreams that land you back at zero.

Re-entering the workforce at age 46, I started with a blank slate.  All I had was a resume  of 20 years of solid employment in jobs I could no longer physically manage.  I also had some ideas of what I wanted to do but no clue how to make that happen in my current state. After 10 years of trial and error, I landed here.  Looking back, I can see that each new work experience taught me something about what it would  take for me to keep working.  So, what did I learn? 

I absolutely need:

1. To like what I do enough to get me out of bed . . . especially on the really hard days.
2. To do work that provides a feeling of value and competency . . . when my body is anything but.
3. To be able to do the work regardless of my physical capacity . . . since my health is so highly unpredictable.

In her article, “When Your Bed is Your Desk” ,  Hilary Jastrum writes,  “If you have to pay bills, you have to work. The good news is entrepreneurship, freelancing, and remote work are offering chronic illness and disability sufferers more opportunities than ever to do what they love, be financially independent and make a difference.”

Really good points. Jastrum offers 5 inspiring stories of women who live with chronic illness and can work from bed.  From my own experience and from working with many hundreds of people around this challenge, though, I’ve learned that it’s not enough to believe it’s possible. Unpredictable and debilitating symptoms typically negatively impact  both your competencies and your ability to just show up.  Whether you’re working for yourself or for others, the key is having the capacity to do your job, regardless of your health. 

Through the years of trial and error, I developed a skill set and a business that matched my 3 ‘must have’ needs. But I knew that working this way would only be possible because the capacity for working for myself..

Are health challenges leading you to consider self-employment?  You might start by asking yourself, do I have:

1. Clear focus and self-imposed discipline. This could be the single, most important competency when you work for yourself.  Yes, you can learn tricks for time management, etc.  But without the focus and self-discipline to use these tools, your great idea will stay just that, an idea. 
2. Clarity regarding your physical, emotional and financial needs and what’s required to do this work as an entrepreneur.  (I’ve created a self-assessment for this in my workbook, Keep Working with Chronic Illness).
3. Competence in a skill set that adapts to entrepreneurship, freelancing and remote work and that is in demand. 

Are you shaking your head No  —  to 1 or all 3?  If so, ask yourself,

• What would make it possible for me to be able to work this way?
• What options do I have that I haven’t thought about?