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Why Must It Be So Damned Hard to Be Sick?

I’m fully aware that the concepts of “fair” and “unfair” are constructs of the human mind. Politely stated, stuff happens. We then process that stuff and sort it into any number of mental files, “fair” and “unfair” being but two of the many choices in the filing cabinets we all carry around in our heads. Yeah, it seems unfair that I got slammed with the MS stick, but so did 400,000 other people in the USA. It’s also unfair that I wasn’t born into British royalty, but, given my proclivity for drunken shenanigans, the royal family might think it unfair if I was. Then again, I’d probably fit right in…

That said, I do think it is unfair that people socked with chronic illness are forced to not only deal with the ramifications of their diagnosis but also with a medical infrastructure that often seems geared towards making being sick as difficult as possible. It’s as if having a terrible illness isn’t quite enough; most patients soon find that on top of their condition come layers of impediments that seem designed to make being infirm an exercise in frustration, aside and apart from the effects of the disease itself. Primary among the contributors to the difficulties encountered by the chronically ill are insurance companies, pharmaceutical companies, and the doctors who treat the illnesses themselves, an interlocking triumvirate that oftentimes seems intent on destroying the peace of mind of those unhappily forced into its grip. Let’s look at each of these elements individually, and explore the many fangs of this three-headed beast.

First, we have the insurance companies, which are generally perceived as big, boring, faceless monoliths filled with human automatons making love to their spreadsheets and actuarial tables. The reality of the insurance industry is a bit different, though. Insurance companies are professional gamblers who look at the entire world as one big casino. By fastidiously crunching data accrued over centuries, insurance companies place bets tilted in their favor on almost every aspect of life, including life itself.

In the case of the health insurers, the primary wager placed is that the money paid to them by the mostly healthy people they insure will far outweigh the money the company needs to pay out when the bet goes wrong and their customers get sick. Like any gambler, insurance companies hate to lose. When their wagers go south, they’ll shamelessly employ any number of unsavory tactics in an attempt to minimize their losses. For patients forced to deal with insurers who aren’t keen on making good their part of the wager, this means having to navigate intricate bureaucracies who play by rules largely of their own making, utilizing tactics designed to discourage and dismay those trying to get their fair due.

Primary among these strategies is simply to delay making payments in the hopes that the patient will grow so incredibly frustrated they’ll eventually throw up their hands and give up. Insurers do this by putting as many obstacles in the way of the patient as possible, in the form of a labyrinthine paths to payment filled with large amounts of paperwork, endless requests for additional information, and a wall of bureaucracy meant to intimidate and appear impenetrable. Is there any less savory prospect than having to get on the phone with an insurance company representative to try to resolve a claim that the insurance company has arbitrarily denied? I’d rather try to brush my teeth with a flaming stick.

In the nearly 15 years since my diagnosis, I’ve spent countless hours on the phone doing battle with insurance company demonoids intent on frustrating my every attempt at having them make good on their obligations. Requested paperwork, once delivered, is often mysteriously “lost in the system”, requiring it to be refiled all over again. Claims are passed from department to department in an apparently endless loop, with each department introducing a new set of rules and requirements. The phone reps themselves are not empowered enough to actually take any actions, meaning that most of what is said to them is simply wasted breath. Aargh!

The key to getting eventual satisfaction (not to mention the money owed to you) is to never give up, even if it feels like your brain is about to blow through the top of your skull. In the words of Winston Churchill, “Never surrender!” If the phone rep is unable to give you a satisfactory answer, demand to speak to their supervisor. If that supervisor is uncooperative, demand to speak to their supervisor. Eventually, if it seems that you have run out of people to talk to, threaten the nuclear option: tell them you are going to get your state insurance regulators involved. This will usually lead to a miraculous resolution of your case. Unless, of course, you live in a state with lax insurance regulations, in which case you might try making hyena noises into the phone.

Of course, one of the reasons the insurance companies are so loathe to make payments is the outrageous costs of medical procedures and pharmaceutical products. This brings us to the second member of our triumvirate of torture, the pharmaceutical companies. Contrary to popular belief, the pharmaceutical companies themselves are not inherently evil, they just smell that way. The first thing to keep in mind when thinking about the pharmaceutical industry is that pharmaceutical companies are not in business to produce cures. This may be difficult to grasp at first, but truer words were never spoken. Except maybe “never eat enchiladas after midnight”. The indigestion will kill you, and you’ve got enough problems.

All of the major pharmaceutical companies are public companies, meaning that their stock is traded on the public stock exchanges. As officers in public companies, pharmaceutical executives are mandated by law to be beholden to their shareholders, not to the patients taking their drugs. The importance of this point cannot be overemphasized. Given this reality, a company making billions of dollars on a drug designed to treat a disease could potentially run afoul of their stockholders (and the law) if they came up with a drug that cured the goose that lays perpetual golden eggs. This is a classic conflict of interest.

The tremendous profitability of “successful” pharmaceutical products has led Big Pharma to engage in many morally questionable activities. Believe it or not, more money is spent on marketing pharmaceuticals than is devoted towards the research and development of newer and presumably better drugs. Since the pharmaceutical companies themselves fund most late stage medical research – they are the only entities with enough money to do so – negative research results are often suppressed and never see the light of day. This means that the research our doctors rely on when making treatment decisions is inevitably skewed towards the positive. Supposedly independent research has often been found to have actually been written by ghostwriters in the employ of Big Pharma. The pharmaceutical lobby is one of the most powerful in Washington, practically ensuring that most of these ills never get properly addressed by our lawmakers.

Having said all of that, the most insidious and pernicious way the drug companies impact patients themselves is their ongoing practice of bribing doctors to prescribe their drugs. Naturally, these bribes are dressed up in all manner of tuxedos and ball gowns, taking the form of “honoraria” or “consulting fees”. Doctors are paid copious sums to “educate” their fellow physicians, most often over expensive dinners at fine restaurants. Physicians are invited to “educational symposiums” which take place at luxurious resorts where most of the education seems to come in the form of 18 holes on a golf course. In one of their latest ploys, pharmaceutical companies ask doctors to fill out surveys which earn the physicians points that can be redeemed for all sorts of luxury goods (click here).

How and why are these practices not illegal? Got me. Before MS forced me to retire, I worked in the music industry for one of the largest multinational entertainment companies in the world. If our company was caught paying radio stations to play the records we produced, people would go to jail. Now, what is more harmful to society, music companies paying off DJs, or drug companies paying off physicians?

Thankfully, patients now have a resource by which they can find out just how much money their doctors are taking from pharmaceutical companies. The website “Dollars for Docs” makes it easy for patients to look up their doctors and find out exactly how much pharmaceutical company money their doctors pocketed from August 2013 to December 2014 (click here). I’m happy to say that my neurologist doesn’t even allow pharmaceutical company representatives into his clinic, and the fact that he doesn’t appear on the Dollars for Docs database confirms this. If your doctor does show up on the database and has pocketed tens of thousands of dollars of pharmaceutical company largess, it’s certainly within your rights to question them as to how these payments influence their treatment decisions.

Which leads us to the final element in our trilogy of torment, which, tragically, is often our physicians themselves. This is by far the most heartbreaking component of the obstacle path patients with chronic illness must navigate, as our doctors should be sources of comfort and care, not necessary evils. I consider myself extremely fortunate to have as my neurologist a man I not only respect but for whom I also have a very real affection. And I’ve every reason to think that the feelings are mutual. Sadly, in my contacts with literally hundreds of MS patients since I started this blog, I’ve found that the clear majority have a negative relationship with their neurologists, with feelings ranging from mild apprehension to utter disdain.

As patients saddled with chronic illnesses, we are forced to enter long-term relationships with the doctors we choose to treat our conditions. As with any long-term relationship, it’s important to choose a partner who will be a positive in your life. And yes, I did say partner. The patient-doctor relationship should be a partnership, not a dictatorship. The patient should be respected and educated by their doctor, not talked down to or given orders without any explanation.

Oversized egos seem to be abundant in those who don white coats and endeavor to be healers, and I suppose a certain amount of ego is only to be expected given the often daunting professional path taken by those who choose to treat intractable illnesses. But, contrary to what many of them seem to believe, doctors are not gods, and the fact is, just as in any profession, there are those who are great at their jobs and others, not so much. There’s an old joke that asks “What do you call someone who graduates from medical school with a C- average?”. The answer: “A doctor”.

For patients with serious illnesses, it’s easy to feel at the mercy of the person we desperately hope will relieve the burden of our disease. Sadly, I’ve heard far too many stories of supposed MS experts giving patients horrible advice, putting them on treatments clearly wrong for that particular patient, or leaving the patient themselves to make serious treatment decisions while providing little or no pertinent information upon which to base those decisions.

My first MS neurologist, the man who gave me my diagnosis, was I am sure a brilliant human being, highly respected in his field. Unfortunately, he had the bedside manner of The Great Wall of China, without the scenic views. I was shocked when at the end of our first appointment he handed me four videotapes – each promoting a different MS drug – and told me to go home, watch them, and come back with a decision as to which drug I wanted to try. I was so confused I could barely get a word out. At that point I had barely wrapped my mind around the fact I was seriously ill and knew absolutely zilch about Multiple Sclerosis. I was overwhelmed, frightened, and certainly in no position to pick a drug based on some slickly produced video presentations. Needless to say, this neurologist did not stay my neurologist for long.

I do realize that in many parts of the country and the world MS specialists are hard to come by, so many patients have a limited choice of doctors. Even in these situations, though, it’s important to make sure that your questions get answered, that your fears and concerns are addressed, and that you are seen as a human being, not merely a body harboring a dread disease. Always remember this: your doctor works for you, not you for them. Just like anybody else you pay for service, your doctor is under your employ, not the other way around. As your doctor’s employer, you are free to fire them if you are not satisfied with the job they are doing. Now, that doesn’t give you the right to be disrespectful, impolite, or tyrannical, and even under the care of a top-notch physician dealing with MS can be a messy affair, both emotionally and physically. You owe it to yourself, though, to become an active participant in your treatment plan, and that means partnering with a doctor you can trust and respect, and whose motivations aren’t subject to suspicions of self-interest. If your current doctor fails to meet those criteria, I suggest you start looking for a new one.

In short, being sick sucks. Not only do we have to deal with the ravages of disease itself, but also with all sorts of ancillary BS that makes life for those unfortunate enough to be stricken with chronic illness exponentially harder. Between the insurance companies, pharmaceutical companies, and some physicians, the impediments faced by those with serious illnesses can be almost impossible to confront. And yet confront them we do, with a quiet heroism that goes almost completely unacknowledged.

The myriad obstacles thrown at people with serious illness are by and large beyond the comprehension of the healthy, as one cannot fully understand just how dysfunctional the modern medical establishment is until one is thrust into the belly of the beast.. We who are members of a club that none of us wanted to join share insights and experiences that are ours uniquely. As WC Fields famously said, all in all I’d rather be in Philadelphia…

This article was originally published on Marc’s website on 11/18/16 and is being featured on MultipleSclerosis.net with his permission.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • dhortho1
    11 months ago

    Hi Marc,
    Thank you for responding. I’ve been reading your essays here at MS.com for some time now — you are a terrific writer. I’m sorry you have had to suffer so with this crazy, impossible to understand illness. I imagine your baffling case has made the lecture circuit at medical meetings.
    I don’t have MS but I’m trying to better understand someone who does. I’ve been reading everything here and elsewhere to learn what I can. Beyond learning the science of MS, the personal stories such as that of yourself have been most revealing and helpful.
    My MS friend and I reconnected via LinkedIn after some 40 years and we were having the best “conversation” innocently catching up on each other’s lives, families and careers. Out of nowhere, she stopped. Finally, she posted that she has gone “dark” and does so often (I didn’t even know what going “dark” meant). She was in the process of moving herself and her elderly parents from Houston to Durango, Colorado and states she is overwhelmed. Her mood darkened considerably and suddenly to the degree I didn’t recognize her as the same sweet person. All of a sudden I was being lectured to, that she “may use going ‘dark’ as a test to see if friends will still be friends without constant attention” and as an onely child she was and is quite content to be by herself. I’m thinking Good Grief! — what the hell are you talking about? She says she has “no time to communicate” and to “hang in there and maybe we can have a more in depth conversation down the road”.
    It’s been 7 months now and no word. Does this sound like MS? This reminds me of your comment about unreturned emails and phone calls and how wounded animals retreat into the wilderness.

    Call me clueless, confused and hurt,
    David

  • Marc Stecker-Wheelchair Kamikaze author
    11 months ago

    David, I’m sure many of my own friends feel the same way you do. It’s hard to explain why, but to all but those of my absolutely closest family and friends I’ve “gone dark” for a while now. Something about the disease leads people to self isolate.

    Not sure what kind of condition your friend is in, but in my case I’m at the point where I am practically housebound. Frankly, hearing about the “normal” lives of others, with their attendant ups and downs only puts my own situation in clearer focus. I can of course still relate to the “problems” of my healthy friends, but given my perspective their problems would seem to me to be blessings. I almost want to scream “want to trade?” when the inevitable complaints about work/relationships/etc. start.

    I know I’ve really no right to judge, and I try not to, but I find myself avoiding contact despite myself. Like your friend, I was an only child, so I’m quite comfortable being alone, and have actually come to enjoy the solitude. At times the outside world only serves to put the focus on my own dire situation, and though I’m not proud of it, pride and jealousy do play their parts.

    So, in a nutshell, my advice would be not to take your friend’s actions, or lack thereof, too personally. Those of us dealing with chronic debilitating illnesses also have to deal with some complex psychological gymnastics, and oftentimes it seems easier to just shut it down and retreat into a world of our own making…

  • dhortho1
    11 months ago

    Marc, I don’t know the extent of her illness, she didn’t say and I was careful not to ask too many questions. I’m pretty sensitive in such matters having experienced my own mother’s long ordeal with ALS — another terrible disease.
    I’ve just never seen anyone switch from sunny and bright and positive one minute to dark, angry and unresponsive the next. I’ve reread my posts searching for anything I may have said to trigger this and have had others do the same — nothing there to suggest such a response.
    I can only reason that there are psychological issues at play like you have mentioned. It breaks my heart. I wanted to be a supportive friend and it pains me to think my friend suffers this way and shuts me out.
    It struck my that you have “gone dark” with all but your closest family and friends, yet, you responded to me, a total stranger. I very much appreciate your doing so helping me to try and understand something that ultimately is probably not understandable, at least for me.
    I’m satisfied I’ve done what I can — but I’m left to wonder. Thing is, if she ever does try to communicate again, I don’t know that I will respond because I can’t trust her to not go “dark” mid-conversation again. MS is tough on relationships. Time to let it be.
    Thanks and take care, David

  • dhortho1
    11 months ago

    Marc,
    If you don’t mind my asking, what type of MS have you been diagnosed with? Thank you.

    David

  • Marc Stecker-Wheelchair Kamikaze author
    11 months ago

    Hi David,

    I don’t mind you’re asking at all. I’ve been diagnosed with PPMS, but it’s not a firm diagnosis. If I do have ms of any type, it’s a very atypical case. My spinal fluid doesn’t have typical markers for the disease (O-bands), and I’ve only ever had two lesions, both of which I remain completely unchanged in the 15 years since I was diagnosed. Yet, 15 years ago I was displaying only a slight limp in my right leg, and today my entire right side is paralyzed and my left is quickly weakening.

    I’ve left some of the best minds in the business stumped. I’ve seen doctors at a variety of prestigious institutions, including the National Institutes of Health, but no one has been able to give me a definitive diagnosis one way or the other.

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