Are you choosing between healthcare and a paycheck?

40% of Americans live with a chronic disease and close to 35% live with multiple conditions. Despite these overwhelming numbers, people with chronic illness face a constant challenge with getting and maintaining healthcare. These conditions drain energy, deplete finances and often hinder the ability to hold a job—often the only way to get reasonable healthcare. Read more on our site: Are you choosing between healthcare and a paycheck?"
Rosalind Joffe
Written by
Rosalind Joffe Chronic Career Coach

What kind of choice is that?  

Considering that 40% of Americans live with a chronic disease and close to 35% live with multiple chronic conditions, it’s a question that that too many of us face.  If you’re a member of this ‘club’, it’s likely that you’ve experienced how draining it is to get the healthcare you need. It takes a toll on your capacity to carry on with your life.  It can seriously damage your capacity to hold a job. Chronic medical expenses is not something to be taken lightly.

I’ve heard stories where getting a prescription medication for allergies requires repeated phone calls and even an office visit to a healthcare provider, long waits ‘on hold’ to talk to a real person at the insurance plan, and then a trip to the drug store.   Unfortunately, most of these transactions can only be done during  ‘normal’ work day hours.  Since most chronic conditions are unpredictable, you can’t possibly prepare for this.  And when  difficult symptoms already make your day a misery, the added burden of getting treatment can create chaos at work.  When your body is under siege, dealing with  co-workers or a boss’s response to your medical needs can be the last thing you want to manage.

That’s one reason many try to hide these activities rather than sharing it.  But then, where do you carve out the time? According to the National Health Council, 32% of people in the U.S. do not get paid sick days and 24 % have no paid vacation time.  Even with paid sick time, if you live with chronic illness, you’d prefer to save that time for illness rather than unplanned appointments (such as having your ribs put back into place as a client with Ehler’s Danlos does once a month) or a visit to your doctor to check your meds immediately (as a client with a chronic heart condition needs to do). 

Let’s face it.  Even the most supportive bosses become frustrated by employees  spend a lot of  work time on personal calls, health related or not, or leave work unpredictably, even for a necessary health appointment.    

Dr. Victor Montori, of the Mayo Clinic,  refers to this as the “work” of being a patient. “For people with chronic conditions, the health care system is blind to their context,” Montori says. “In particular, it’s blind to the work of being a patient and the capacity that people have to shoulder that work and make it happen.” Until recently, it’s largely been assumed that this is  an inconvenience that patients must put up with to get good care. But for those living with multiple chronic conditions that require on going care, it’s more than mere inconvenience. 

When I returned to the  workforce in 1995, after being unemployed for 3 years due to illness, for the first time in my 25 year history of employment,  I joined the self employed. My health was unpredictable but it wasn’t just  symptoms that made me unreliable.  The time spent getting my healthcare made it impossible for me to hold a job.

Over the years, with the advances in technology, I’ve been able to forge relationships with my providers in which we use email to communicate as much as possible. That saves an enormous amount of wear and tear. But even in a relatively healthy week,  I can spend several hours in office visits and procedures.  If I weren’t self employed, I’d be unemployed.  I’m quite fortunate and I know it.

At this moment in time, much energy is going toward how to save money and waste in healthcare costs.  Let’s include the cost of lost work time and  jobs due to managing health in this exploration.  What hoops do you jump through to get your healthcare needs met?

This article was originally published on cicoach.com

Rosalind Joffe
Written by
Rosalind Joffe Chronic Career Coach

Rosalind Joffe, founder and president of ciCoach, is passionate about giving people who live with a chronic health condition the tools they need to thrive at work. She founded the coaching firm, ciCoach, building on her experience in living with chronic illnesses (including multiple sclerosis, ulcerative colitis, and chronic pain) for almost 40 years. Rosalind has worked with hundreds of individuals to improve their quality of life while living with difficult health. Rosalind co-authored Women, Work and Autoimmune Disease: Keep Working, Girlfriend! A patient advocate, Rosalind chairs the Massachusetts Health Quality Partners Health Council sits on the Board of Directors and chairs the Governance Committee. She holds a B.S. in Communications, M.Ed. Boston University, a certified mediator, has advanced training in Focusing Practice is,ICF accredited, and is a Medical Coach Institute practitioner. Twitter @workwithwellness Facebook @cicoach

This article is for informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek medical advice from your physician or health provider for your specific needs.

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