Tackling disabling autoimmune disease with obstinance and humor.
Posted on February 2, 2020 by Annastasha Parker
“You probably have the same virus everyone else has.” The words, coming from a trained professional, do not hold the comfort I’m sure this well-intentioned doctor means them to. She doesn’t seem to realize what I immediately understand from her statement. Her words, meant as a diagnosis, are nothing but a guess. She guesses I have a virus, just as she and other doctors have been guessing “everyone else has” the virus. The fact is, no testing has been done. Not on me, even though bacterial infections can quickly turn deadly on my medication. Common sense tells me, if I don’t fit the criteria for testing for the cause of symptoms, “everyone else” probably didn’t either. So, they guess we’re all sick from this virus they aren’t testing for.
Reality is, many of us will return, days or weeks later, sicker with the bacterial infection we had in the first place. All because medicine insists on guessing. Now, don’t get me wrong, I know there is a great deal of guessing and trial and error involved in medicine. Causes of symptoms are often hard to determine, a virus does appear very much like a bacterial infection and vice versa. This is all true.
Yet, what is also true is, we have the technology to tell the difference. A simple tissue swab can tell the difference. But, why use the tests and tools we have when we can guess, right? After all, most people will recover whether it is a virus or bacteria, on their own, in a few days. So why waste the money on testing?
The answer is millions of people like me. For those of us with compromised immune systems, the difference matters, because the treatment matters. When faced with a bacterial or viral infection, we need the right medicine to help us fight, because our immune system can’t do it alone. A fact that should be clearly noted in our charts, or at least understood based on our prior diagnosis and/or medications.
Having already tried, and failed, to alert this doctor to the fact that my medication leaves me at risk for fast spreading bacterial infections, I already know she doesn’t understand my concerns. In fact, she’s dismissed them already, having repeated to me a phrase I suspect she got from the commercial for my medication, which only mentions strange fungal infection risks. But, that’s fine, because she guesses it’s the same virus everyone else has. Sigh. This is the pathetic state of medicine in America.
We have the most advanced diagnostic tools and testing available yet insist on guessing instead of testing. A practice that is leading to pain, suffering, permanent damage, and in some tragic cases, even death. The fact is, you probably know someone who was hospitalized when the bacterial infection they visited their doctor for was mislabeled a virus and allowed to grow out of control. Or worse, someone who spent weeks in physical therapy trying to heal a body part that turned out to be fractured, broken, or torn. I know at least four such people. People who struggled and did damage to arms, legs, backs, only to find out the diagnostic Xray or MRI they needed would have determined the problem, and that such imaging would have eliminated therapy as a viable first step for recovery. People who needed splints, casts and surgery, not exercise.
So, why is this the norm? Why are doctors skipping testing that could give patients definitive answers in favor of the guess, wait and see approach? If you’ve ever asked for an alternate treatment plan I bet you know the answer. Insurance.
Insurance companies have a formula. The formula says, when a patient exhibits symptoms A,B, and C you must first try treatment X, most often the wait and rest treatment, then we will approve a test. It’s insurance scripted medicine, and it’s not working.
Millions of Americans are getting sicker, doing damage to their bodies, often permanently changing their health status and mobility. Because the doctor didn’t order that MRI, because insurance won’t pay for a shoulder MRI unless you have had this many weeks of physical therapy. It’s a numbers game to insurance companies.
We aren’t numbers, we are patients, with individual needs. Sadly, to them, we are just a statistic. Statistics say, doing a pap smear every 3 years will catch the cancer of most women early enough to treat it. Most. So, insurance will pay every 3 years. Even if you have a high risk of cervical and ovarian cancer in your family, only every 3 years, 5 if you are over 30. Because insurance doesn’t care about your personal statistics. Your risk categories and health statistics hardly figure into the picture at all.
Medicine is scripted, and many of us don’t fit the leading role. We are not statistics, we are individuals. Individuals who come to medical professionals for their expertise, expertise doctors can no longer give us unless our pockets are deep. The insurance companies hold the keys to the toolbox, leaving doctors to guess and patients to suffer.
As someone forced by my health to constantly interact with this system, who hears horror stories from so many others fighting for the healthcare they need and pay hefty insurance premiums and deductibles for, I am ready for change. It’s time to do something about the middleman, the runner of numbers and maker of scripts.
It’s time to put medicine and the tools needed to properly practice it, back into the hands of medical professionals.
Are you ready for change? Have you been injured, hospitalized, or dicked around by the system as it is? Please share your stories, leave a comment, let’s talk about what needs to change.
Category: Getting Diagnosed, living, Medical Options, pain, Uncategorized
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