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 one that too many 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.
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 an NPR.org poll, 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?