I don’t get paid for this but it’s my job.

Ironically, I pay others for the work I do. You may need to read that twice to let it sink in. I pay health insurance companies, doctors, and pharmacists to do a job that I actually do because they don’t – or can’t. Though it’s not on my resume, I’m a Professional Patient. I make the phone calls when I catch the mistakes because no one else has the time. I make the phone calls when my doctor doesn’t know what my other doctor said, even though they share a computer system. I call to make sure my prescription is filled on time. I call to make sure my insurance company will cover a service because it’s not clearly stated in my plan information. I call to challenge billing errors and then I call to follow up at least three times before it’s settled.   If I want my appointments on time, my drugs on time, my healthcare monitored, I have to be the person to make it happen. I’m an employee with multiple duties yet no job description, no contract, no benefits, no time off, and certainly no paycheck. I manage the phone lines while sitting at my desk with my laptop, phone, and notepad. Or in my bed, at my kitchen table, or out of state. And I pay someone else while I’m doing the job they should be doing. If I was still a healthy person this wouldn’t be so bad; I’d have to manage frustrating phone calls and erred bills maybe twice a year if I’m unlucky.  That’s not so bad.  But having to do it multiple times a week wears a body down. Living with ankylosing spondylitis wears a body down – it’s almost exactly like having the aches and fatigue of the flu, 24/7. Pair the two – constant healthcare phone calls (on top of appointments, lab visits, and self-medication) and chronic pain – and I have a full-time job.  One that I didn’t apply for or even consider when I earned my degree in Sociology.

Don’t get me wrong. Doctors and nurses do a lot, often more than their fair share. They have way more patients than they can handle. It’s not their fault. Oh yes, I do know there’s a patient advocate per facility. Let me repeat, A patient advocate. One. For all the patients. Maybe two.  Have you heard of more than one? Regardless, the patient advocate usually becomes just one more person to call. One more person to repeat the story to. One more person who ends up giving me another list of numbers to call instead of the answers and the help I need. But they get paid.  I don’t and I’m working just as hard or harder, and it’s me we’re working for, right? Right? Is anyone listening? The system exists for the patient, right?

So I have lists and lists of numbers to call. There are no dead ends but many cul de sacs. I’m not quite going in circles with these calls, it’s more like I’m on the shuffle setting on an iPod; I could reach the same person twice but the machine is in charge of that chance. Once I’ve reached the person who is supposed to know the answer I’ve often figured some other possible workaround myself or forgotten why it is I’m calling this person. And often she delivers news that I can’t be helped or that she has no idea why I called her. At the end of the day I’ve spent hours repeating my story to different people who are supposed to help, but who can’t. Or don’t know how. Or who give me another list of numbers to call. Consider this example:

I call my pharmacy to refill my prescription for my biologic – a specialty medicine that is shipped to my door every four weeks with four pre-filled, auto-injector syringes packaged in a refrigerated box. I learn I need a new prescription written before I can order my refill. I wasn’t notified there were no refills remaining on my prescription – usually the pharmacy and doctor work this out ahead of time so that I don’t even have to think about it. I’m told by the pharmacy it’s faster for me to call the doctor because it takes longer for the pharmacy to do so. I need my next shot in a week. There is no substitute and no generic for this medication I use to manage my ankylosing spondylitis.  If I miss a shot I am at greater risk of a flare-up, but even if that doesn’t happen my pain levels dramatically increase within a day of missing a shot. I experience more pronounced symptoms (severe all-body joint pain and fatigue) and miss work, appointments, and anything else on my calendar. Long term, without the biologic, my disease can progress faster. Time is precious. So, I call my doctor to ask him to write a new prescription. And I wait on hold. And I finally speak to a receptionist. And I wait on hold longer while I’m transferred to my doctor’s assistant to leave a message.  And I wait for the call to be returned. And when I am called back, later that day or the next day or a few days later, I have to be the squeaky wheel to get what I need in an expedited fashion.  Then I have to call the pharmacy back and speak to a different person who has no idea what I’m talking about, until, 24-48 hours (or longer) later, my prescription is on its way to me but a week late because the time it took for me to do all the legwork to get the refill. And sometimes I have to call my insurance company and start the process over because they don’t want to approve the renewal of the prescription I’ve been taking for over a year.

Hold it.  Put the system on hold, not me.

Our system is broken.

Let me get this straight: I am happy to manage my health. This is different than having to manage aspects of my healthcare that should be non-issues in the first place. Managing health includes taking my medication as directed, caring for my body, eating healthy food, getting enough exercise, and feeding my spiritual and mental self. Everyone has that responsibility.  Managing health is an individual exercise. Managing healthcare, for a chronic disease patient, involves roughly 10-20 hours per week (the example given in that link is a patient with type 2 diabetes, not ankylosing spondylitis) or more if there are multiple conditions or the disease is not well-managed. Managing healthcare involves making phone calls to follow up on appointments, labs, insurance, records, billing, prescriptions; researching the internet for different treatments, healthcare plan options, financial assistance programs, doctors; going to appointments; filing medical records, bills, receipts, prescription information; taking medication as prescribed, following treatment regimen, tracking additional expenses not covered by insurance; etc etc. Many of these things should not be necessary if the payments I make for my treatment rendered the services due. The healthcare system as it currently exists is inhumane.

I want to work. I desire to be a fully productive member of society. If managing my healthcare wasn’t a part time or full time job, I might be able to work a full-time job. Perhaps fewer people would rely on public assistance to survive. In my own experience, if I could work and worry less about my healthcare, I’d feel more “normal,” I’d be less mentally exhausted, and I’d have more incentive and desire to take care of my health. My mental health would be better with less stress about relying on a system that is profit-centered rather than patient-centered. The healthcare system should prioritize patient well-being on all levels and that includes handling the administrative side of patient care as well as the things it currently does….ahem, what do they do all day besides handle customer complaints? So yeah, it’s win win for all. Happier patients (consumers is too strong of a word if we’re not getting what we pay for) means less work for everyone and it is possible, if the system worked like it is supposed to.

I don’t want more money out of my health insurance company, I want to pay less out of pocket.  I don’t want an apology, I want an apology AND I want to stop having to manage my own healthcare for 20 or more hours per week – that means I want the corporations, the providers, the money-makers, to do their jobs.  I need a system where I don’t feel I’m throwing money into the mailbox while I sit at my computer day after day tackling the problems caused by a broken system that sucks money away and uses it to put up billboards and create ads on television. And, hello healthcare system, please quit placing all the guilt of high medical costs on the patients.  If we received better care in the first place, we wouldn’t need so much specialized care. It’s not our fault we’re so sick. It’s yours.

So, if I’ve calculated correctly, health insurance companies, for the conservative estimate of twenty hours per week I manage my healthcare on top of the time I spend on my health, at $15/hour – a conservative estimate – I’ll be expecting a monthly paycheck amounting to $1,200 from here forward (including back pay dating back 3 years when I began paying out of pocket for health insurance), which makes my healthcare free, imagine that. Also, be forewarned that I’ll be counting my whole living space as office space on my taxes next year since I have filing cabinets full of bills and letters and notes that I’ve taken regarding dealing with you. So, universal healthcare, anyone?

If you found this post useful in some way, please consider supporting my work with a $3 tip at ko-fi.com/beingcharis. Your support will help keep the lights on and make me smile.