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?
Andrea Rosenhaft says
I feel fortunate to have a supportive supervisor. I am a tele-commuter for a Fortune 15 corporation, but as part of my job I also go out into the field several days a week and for the field visits I make my own schedule. I have severe and chronic migraines and asthma which can be difficult to manage. For me to be able to at least attempt to live with the migraines, I am followed at a well-known headache center which is about 45 min from my home. I go there every other week, missing about 2 1/2 hours of work to get nerve block injections or Botox injections. In January of this year I was hospitalized for 5 days for an intractable migraine. My asthma is more unpredictable. I’ve been hospitalized, have had to go to
the ER, urgent care or even take 10 minutes away from the computer to use my home nebulizer anywhere from 1 – 3 times a day. I also have Prinzmetal’s Angina, but thank goodness I have never had an attack while I’ve been working. I can’t use nitro. I try to downplay my symptoms as much as possible until they become an emergency – if anyone asks me how I’m feeling, I say fine because they cannot see me. We communicate through instant messaging or Webex on the computer.
Rosalind says
Wow. You are fortunate to have your supervisor. It sounds as if you’re also good at getting your job done with all this going on. Your healthcare requires a lot of attention and I can imagine what a juggling act this is. It sounds like a bit of a tightrope, is it? If yes, how is that going for you?
Deb says
Healthcare is such a time suck for most people with chronic illnesses (I’m guessing people spend 8+ hours a week dealing with health-related issues). The ideal situation would be for employers to hire chronically ill people 24-32 hours a week while the government provides partial disability payments and medical insurance to cover the gap in income and ensure that the person has healthcare.
Unfortunately, in our dog-eat-dog country, this is unlikely to ever happen.
Rosalind says
I agree – won’t happen here. Your story sounds like you’ve had a very difficult time., More than most. And I am sorry and wish you strength in getting through all this – and hope you can get support where you need it,
B. says
I’ve been telling doctors for more than a decade that dealing with American healthcare (the redundancy, the time on the phone, the time going back and forth to get simple questions answered or copies of documents, time lost getting second, third and sometimes even fourth opinions, the time explaining to new doctors my rare conditions and symptoms, the time spent dealing with negligence and malpractice, the time spent dealing with the energy drain and emotional toll, etc.) in combination with all of my symptoms is like having an additional UNPAID job. In fact, in the last couple of years, I’ve referred to American healthcare and my symptoms as two separate UNPAID jobs since both have only gotten worse to the point that one might take up one day and the other might take up the next.
Now, I have a brain tumor, and I’ve had to pick work over treatment at this point even though the tumor is growing because I have Medicaid and I was just told that they likely won’t cover me to see the out-of-state specialist that I need to see and if I apply for that coverage it could take one or more YEARS to get approval and it’s unlikely I will get approval unless I’m close to death…and…maybe I should switch carriers (hint hint). I was even told by a nurse through the insurance carrier that I should just go back to a specific specialist in this state even though I had just finished explaining that the person lied to me in regards to my symptoms and even diagnostic test results. The person also refused to take into account my other conditions when coming up with a plan for the surgery and treatment and acted like it would all just turn out okay without preparation for worse case scenarios and then recommended a treatment that my medical record clearly states I can’t have because it almost killed me once before. Yet, the insurance carrier representative said that I should just write all of the above off as accidents and go with the specialist anyway…because they are nearby and in my state.
So, here I am. I have multiple conditions and several of them are rare ones. Sure, there are specialists in this state who claim to be “experts” with this type of brain tumor, but I have learned from the organizations that are knowledgeable about it and other patients that a real expert is only someone who primarily spends their time removing these specific tumors. In my state, there is only one center that has doctors who spend the majority of their work removing and treating this type of tumor and the doctors do not have a good reputation. So, that means going out of state for care. Yet, I won’t have coverage, which means that I need to increase my income somehow to pay for non-Medicaid insurance premiums while the symptoms intermittently worsen and I also deal with symptoms from my other conditions.
I loathe American healthcare with a passion. Many of my health conditions would have been under better control and I would have been earning a better paycheck if not for the utter horror of American healthcare.
Jennifer says
Bravo for this article. Too bad there is no light at the end of the tunnel.
Danny van Leeuwen says
I’m wondering about an algorithm for making decisions about this. What would be the decision points/nodes and the resulting options? Likely nodes include insurance coverage, functional level, family/network/community support, quality of life, and ?? It would be interested to develop a decision aid.
Rosalind says
Great idea. Let me know when you’ve got it!
Deb says
I had so much hope that Bernie Sanders would become president, because he was the only person who cared about people with health problems and the cost of healthcare. I volunteered extensively for him and did everything in my power to help him win the nomination. When he lost, I lost hope for my future and the future of everyone with chronic illnesses.
My health is not good enough to work full time, yet I have to do it for the medical insurance. If I could work three days a week, the quality of my life would be dramatically better. I love the actual work that I do, but it is a 50+ hour-a-week job, and I simply don’t have the health for it. My life basically entails working, then spending the weekend recovering from work.
I did outside sales for a decade, simply because I could work from home and no one knew if I was running around to the doctor several times a week. I was a decent sales rep, but I hated the job. Sales managers are frequently sexist, abusive, bullies, and alcoholics, and I became so stressed that I simply had to leave the field, despite it being an ideal work environment for taking care of my health problems.
Maybe, Rosalind, you could start a movement to get people with illnesses to all come together and form a union? Then we could use our collective power to influence legislation and make changes in the workplace that benefit people with health problems.
Thank you so much for calling attention to our situation and being dedicated to helping people with health problems!
Nancy Johnson says
Wow, I wish I had discovered this site sooner. I was tormented by my boss and coworkers. My boss who was ingorant and a true example of the Peter Principle would make inappropriate comments to me. I have EDS, Sjogern’s, Fibromyalgia, Dysautonomia, IIH and CRPS. I was dx with hip dysplasia and was put on crutches for a suspected hip fracture. My boss crudely told me in front of a meeting of my peers that I couldn’t have sex because my p#$$y was broken. This same manager asked me if I was going to commit suicide because I had a lot of medical sticks in the fire. I would go to HR and report her and I was told that was the way she was and that was just her nature and to ignore it. Last year I had to go out for knee surgery and I had no more time no more FMLA. I was kindly asked by HR to leave or risk being fired for attendance thus loosing benefits etc. There is nothing wrong with my brain. I was the smartest one in my department. Since I got ADA accommodations my other coworkers treated me poorly as if I were lazy. My boss would strap me down with extra work to make up for my accommodations. My coworkers would be lazy and not do their work so my boss would give me their work. I had a coworker constantly confront me and tell me that I just wanted doctors to keep operating on me. So I had no other choice I quitely cleaned out my desk weeks in advance. No one was none the wiser. My boss knew that I was leaving to have knee surgery but had no idea I was never coming back. It was brilliant. One good thing about having been a vested enployee of the Virginia Department of Motor Vehicles they are paying the cost for legal representation for ALLSUP to file & fight my disability case. Though I still have my fair share of medical issues and appointments I don’t have to contend with the torment I endured for so long and I am healthier for not having to put up with it.
Rosalind says
Wow – that sounds horrible but unfortunately, I’ve heard it before. I have a hunch this bunch would have behaved miserably regardless of what issue they face and, as is typical, it started at the leadership level. Good think you got out of there. Will you look for different work?