Two hands are tied together with red tape as the person struggles to break free. Some of the ribbons start to break.

Wait, Who is Making My Medical Decisions?

I’m not going to pretend to be anywhere near close to fully educated on how health insurance works. However, as someone who has been living with multiple sclerosis (MS) since 2010, I probably have a little more experience dealing with insurance than the average (and otherwise healthy) individual does. But still, I’m no expert on the matter by any stretch of the imagination. I basically know just enough to get me by, just enough to have allowed me to progress this far in life living with a chronic illness. That said, I’ve been playing this “healthcare game” long enough to see that something isn’t quite right with the rules.

When I first became a patient with a chronic illness

As I’m sure many people do when they first need some kind of medical care, I honestly once thought that health insurance was designed to primarily benefit the people who unfortunately required it. I thought that it would be a small and mostly quiet part of my new life with a chronic illness. Health insurance was something that, so long as I had it, would work behind the scenes and not require me to think twice about it. I figured this whole healthcare thing was simple: you get sick, you see a doctor, that doctor determines what’s wrong, they choose what they think is the best treatment option for you, and then your health insurance pays for the medication your doctor ordered. Oh, how comically naïve I once was.

I get the feeling my best interest is not the priority

I may not be able to tell you exactly how health insurance actually works, but I can tell you how the way it seems to work makes me, a regular user of health insurance, feel. In all the time that I’ve been fighting MS, I’ve probably spent more time jumping through hoops set up by my health insurance than I have spent interacting with my doctors. Since the start of my MS journey, there has almost always been some kind of roadblock set up by my health insurance in the way of me getting the treatment I need when I need it. Most of the time, I’ve managed to find my way around those roadblocks, but they always seem to be there. I always seem to have to put in unnecessarily hard work to earn the right to use my health insurance.

Dr. Dollar knows best

I was under the impression that it’s my doctor’s job to decide what I need to treat my MS because he/she is the one I had an appointment with. But solely based on how the whole process has worked out for me, it doesn’t seem to work that way. Sometimes it seems like the prescriptions my doctors write are not actually orders; they are merely recommendations for some pencil pusher that has never even spoken to me to consider. Sure, most the time, I can get what I need, but I can’t tell you how many times I’ve gotten a letter from my insurance, after several appeals, that says something like, “We are writing to inform you that we’ve reached a determination on the necessity of the prescription your doctor ordered. At this time, we have determined that this prescription is unnecessary and will not be covered by Health Insurance Inc. of Utah.”

Since when do insurance companies know more than my doctor?

Hold on a second...let me get this straight. My neurologist, who has been treating me for years, has actually assessed my condition in his clinic, and has literally reviewed MRIs of my freaking brain, doesn’t know what’s medically best for me? You’re telling me that someone sitting behind a desk on the other side of the country and who has never even spoken to me is better equipped to decide if I need a medication or not? I wonder how that conversation would go if the person making the decision about whether or not my doctor’s orders were necessary was in the room with us at my appointment. Would my doctor have to keep turning to them to ask if, pretty please, he could write me a particular prescription? If the insurance representative concurs with his assessment of me?

Seriously, what do I know?

But I have to mention this once more: I’m not an expert, and I don’t know all the ins and outs of how health insurance works. I’m not at all trying to teach or inform anyone about how this stuff actually works. Just how it typically makes me feel and how that feeling has led me to realize that healthcare doesn’t seem to work the way that it should (if you are to assume the main goal is to provide people with medical care and not just to be wildly profitable). I’m sure that if you were to talk to someone smarter than me who fully understands this industry, they would have a much better explanation than I do as to why things “work” the way they do.

A hopeless obstacle

Like many others, I’ve had a pretty rough battle with MS. I’ve had several neurologists who specialize in treating MS tell me that I’m definitely one of the more aggressive cases they’ve had (not to say that my MS is more severe than most people’s). I’ve lost track of how many times I’ve had to stay in the hospital. I even spent six weeks in an inpatient physical rehabilitation center. I’ve been told that I would probably not walk again, and I have no clue how to measure the amount of pain, both physical and emotional, that I’ve endured over the years. My MS has been a seemingly endless presentation of new obstacles that, even when I’ve been told I probably couldn’t, I have overcome.

My biggest obstacle is all the red tape from my health insurance

But in all honesty? The one obstacle that I feel has been, more often than not, nearly impossible to overcome and has consequentially felt like is in the way of me improving my health, has been all the red tape that my health insurance has decorated my life with. Red tape that has slowly eroded my sense of hope more so than any relapse and the growing amount of long-term disability I’ve collected ever has. To call it frustrating would be a severe understatement. It shouldn’t be this way. My medical decisions should be made by my doctor and me, not my insurance. I can’t tell you what’s broken or how to fix it, just that something definitely isn’t working the way that it should.

How has health insurance impacted your MS treatment

I know that many people feel similar regarding how health insurance can actually disrupt your healthcare. It’s maddening! Does any of this sound familiar to you? How has it affected your treatment of MS? Your treatment of anything related to your health? Share your experience(s) in the comments below.

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