Hi. If you will bear with me, I’d like to talk to you about why the current healthcare bill is not the answer for our great country. We need to start having better conversations about how to solve our problems. I’m not trying to get attention for myself, but I hope you will find truth in my words and talk to others about what I express here. Most of my loved ones don’t already know all of this about me, but will almost certainly recognize me from this story, though I’m posting it anonymously. It’s a scary thing to be open like this, but I’m hoping that by reading these personal things about me, you will be able to see a bit of yourself or someone you love in my story. I’m hoping that by sharing this story, I’m helping someone out there be heard and understood who may be unable to speak for themselves or who is ignored when they try. I’m not trying to say that I fully represent everyone, or even any one person besides myself. This is my story and my experience.
I’m 30-something. I’m white. I’m from a middle-class family. I’m a proud military brat. I was raised Christian. I’m a college graduate. I’m a nurse. I own my own home and car. I live in a very safe neighborhood in a small town in middle America. I like posting cute and pretty pictures on my various social media. I look like I could easily be a soccer mom, though I am not. You’d never know half my story looking at me or even talking to me, but many of those stories are vital to who I am today.
When I was 14, I had a spinal fusion to correct scoliosis. I have had constant moderate to severe low back pain ever since all day every day. Last year, after years of being told to exercise more and/or that the pain was all in my head, an X-ray showed that I had an incomplete fusion, which is a possible surgical result that frequently causes intense pain. Several lifting injuries at work and a car accident happened in the interim that almost certainly worsened my spine, but do not explain that particular finding, nor the pain I had before any of my injuries. I do not know what could have happened had it been discovered immediately, but I can’t help but wonder if it could have been corrected, saving me decades of pain. I do not trust my surgeon who ignored me, and have had other surgeons refuse to consult about it, so I likely will never know and continue to be in pain forever.
When I was 22, I was sexually assaulted. I was drunk or maybe even drugged to the point that I don’t remember the actual incident, so I never felt like I could report it. It greatly affected my ability to trust others, most importantly myself, and I’ve been unable to trust anyone enough to consider a relationship ever since. Besides contributing to my later diagnosis of depression, it gave me some residual anxiety, and I have had a few panic attacks since. It also eventually led to the mental exploration of my sexuality, and I now identify as demisexual, though I’m unable to say for sure if I would have identified the same way prior to the incident.
When I was 29, I tried a medication that is often used for chronic pain, and it gave me depression and suicidal ideation as a side effect. I vividly recall throwing my bottle of pain medication into the back of my bathroom cabinet because I was tempted to take it even though, as a nurse, I knew it was not a foolproof method to commit suicide. The same month, I lost a coworker to suicide and further realized that suicidal ideation is an irrational state. Furthermore, I learned just how well mental illness can hide within a person, and that our society’s fear of mental illness easily leads to devastating consequences.
When I was 31, I had just started my dream job as a nurse case manager, which meant I was still a nurse but had no direct hands-on patient care (thus what should have been a job that would not further injure me). Then I was in a car accident. I thought it was minor, and therefore, I should be fine. Nearly three years later, I’ve had countless medical tests and have seen too many specialists, had physical therapy for my neck, and now undergone three separate eye muscle surgeries. The minor injuries I thought I had turned out to be whiplash and a minor brain injury that damaged the nerves that control the eye muscles among other things. I’ve had double vision and been unable to work or drive for over two years. I get dizzy and nauseated riding in a car and often just in crowds and must limit my TV and computer time severely as to not get migraines trying to keep my eyes focused. My short-term memory is often poor, and I have great difficulty learning new things and being able to express myself as well as I used to. I have always been introverted, and thus generally able to get along just fine by myself, but I often feel isolated and alone now that I must rely on others to so much as go grocery shopping, nevermind participating in anything social.
I am lucky enough to be getting long term disability benefits from my old job for right now, but I’m not sure how long they will continue, nor do I know if I would qualify for social security disability benefits or if those benefits will even be available to me in the future with the budget cuts proposed. I don’t foresee being able to return to work, especially not to my last job, with my continued limitations. I have insurance through the ACA right now, and only through the end of the year. I will not be able to afford healthcare insurance if I will be charged higher premiums due to my many pre-existing conditions, especially if my benefits are discontinued. I will be unable to afford any cares that I need save maybe antibiotics should I truly need some, and that’s only if the out-of-pocket cost for seeing my regular doctor doesn’t skyrocket due to many others being unable to pay for cares. So instead of being occasionally monitored to make sure my problems aren’t getting worse, and that nothing new has cropped up, I could find myself in the ER dying because a brain tumor was hidden by my current brain injury symptoms, or because of kidney failure hidden by my usual back pain, or because of a heart attack hidden by my usual costochondritis, or even because I gave in to the impulse to kill myself should my depression worsen. All are things that could potentially be discovered and prevented in a routine physical and monitoring as needed that would cost much less than a potential hospital stay.
Assuming none of those things happen, I still may lose my home and car and be forced to live with relatives and be unable to contribute financially to my household and society in general. When I have done nothing wrong except maybe listen to the wrong doctors and be in the wrong place at the wrong time. When I have saved people’s lives myself and would love to still be doing so daily.
I know that based on my health history, many may want to assume that I’m a drug addict. It’s true that I have been accused of being one for daring to have a prescription for narcotics. I fill my pain medication prescription once or twice a year, and probably would be addicted had some of my doctors succeeded in convincing me to take medications as often as they prescribed them years ago. However, I have a high pain tolerance and even greater stubbornness that has made me lucky enough to not succumb to the impulse to just make the pain go away, and, for example, only took a single pain pill after my last eye surgery.
I don’t want to be “living off the government” but I genuinely don’t know what kind of job I could get where anyone would 1- look beyond my job history and not conclude my application must be a mistake (this has happened multiple times and I was still refused after explanations were given), 2- not require me to drive, and 3- allow me to work my own hours because I have too many times where my body just doesn’t allow me to do what I want no matter how hard I try, and I can never predict how long those times will last. I spent my career taking care of other people, and I loved it. A part of me is lost now that I can’t work.
I spent most of my career caring for people of all ages who were much worse off than I am, even now. I fear for these people’s lives, and I do not mean in a what-if or worst-case-scenario like I have described for myself.
I know people who were disabled at birth, fought like hell to survive, and eventually went on to lead “normal, healthy” lives. I know people who made some bad decisions due to the cards life dealt them, ended up near death, and turned their lives around because they got a chance to start over. Almost every single patient I have ever had would have died or had severe health consequences and later died because of it had they been uninsured and turned away.
With the proposed bill, everyone who has pre-existing conditions will have to pay out of pocket for them, or else become further disabled or die because they are unable to afford basic monitoring. I never had a patient who did not have at least one pre-existing condition that affected their quality of life. Preventative healthcare matters. People who have regular care can get treatment before small problems become disabling and/or life-threatening. Without available preventative care, women are going to stop receiving prenatal care and free birth control and STD treatments. More children will be born with greater incidences of health problems, and many may be allowed to die because the costs will be too great to let them live. Diabetics are going to stop being properly monitored and will likely start skipping doses and reusing needles to decrease costs, and thus more will end up dying of infection in the hospital. Those with heart disease are going to stop being properly monitored and therefore properly medicated, and hospitals will overflow with people dying of heart failure, heart attacks, and strokes when those numbers are already too high. People with cancers will choose to die rather than leave their loved ones in massive debt. All of these situations will multiply as those who can’t afford healthcare get diagnoses late instead of in early stages where medical attention can do the most good.
Lack of healthcare coverage will have a negative impact on the economy. Without health insurance, people often turn to emergency rooms as their only recourse for medical treatment, even going so far as to fake life-threatening symptoms in order to receive proper care. Doctors cannot be expected to deny treatments in a possible life or death situation and must often admit those patients to the hospital for expensive testing, room, and board at the costs of the taxpayer. When people have the option to go to a local clinic, or better yet, a primary care doctor, this kind of situation becomes extremely rare, and ERs and hospitals are able to devote time, staff, and resources to those who truly need to be in the hospital.
Beyond being forced to visit ERs, many people will have to prioritize medical costs with other costs of living. Widespread debt and bankruptcy will occur as people choose medication and food over paying their rent and utilities. It already happens in poor areas. The ACA, while flawed, was greatly helping in those types of situations. As I saw working with people living in “inner-city” areas in my last job, when people didn’t have to worry about healthcare costs and the ability to access treatments, they were able to focus on other things, like improving their homes to be safer (yes, safer, not prettier) and going back to school and work now that they and/or their loved ones were healthy enough. Did some people I met take advantage of the system and act entitled- yes. But for every person I met like that, there were at least ten more people who wanted to better themselves and just appreciated being treated like a human being.
It is easy to try to group everyone together and make assumptions. Life is easier to understand if we have rules, and a clear right and wrong can be determined. But most things are not easily categorized. I think there are only two absolutes in life: compassion and indifference. I think people try to act with compassion, but that ultimately indifference comes into play, and that is hard to see sometimes when indifference tips the scale.
I believe that those who support the healthcare bill are doing so out of compassion. I understand that people don’t want to be held responsible for those they don’t know, especially when they think that those people may be harmful to the society in which they wish to live. Why should anyone have to pay for someone else’s bad decisions? Not your fault, not your problem. I understand that. You work hard for everything you have, and that hard work deserves to be rewarded. You should be able to do what you deem necessary to protect and reward yourself and your family.
However, like I said, I have often found it to be true that given a chance, those “harmful” people are anything but, and would be your friend and neighbor given different circumstances, and are usually extremely compassionate people because they know how difficult life can be. Like me, most people who have pre-existing conditions could not have feasibly prevented having them, and therefore should not be punished for things that already negatively impact their lives. I beg you to act with greater compassion to our society as a whole than you do to those in your particular social circle. It may cost some dollars to begin with, but will result in better, cheaper healthcare for everyone in the long run. Let’s try to create some bridges between sects of society instead of adding more lines in the sand with finger-pointing or worse on both sides that is the sorry state of the nation at present. Give as many people as possible the chance to live healthy lives. Give as many people as possible the chance to prove to you that we are more alike than we are different, and that life can be better and safer for everyone when we all attempt to see life from someone else’s perspective.
I do not have all the answers to what the best healthcare system would be. I know it is a very complex issue, but I think the most important part is very simple and too easily overlooked. Medicine is the great equalizer among us. Everyone gets viruses. Everyone bleeds if cut. Everyone benefits from having someone there who knows when your skin is too warm, your breath is too labored, your skin is too flushed, or your speech is too garbled. Everyone benefits from having preventative screening tests that can be the difference between living a long life or dying in infancy. Everyone is mortal. Everyone is human.
(In case you were wondering, it took me several days and many headaches to compose and edit this; that’s how important it is to me. I also asked some people to help edit; thanks, friends.)