Caregiving: Life as A Cog Trapped in Soulless Systems

Few of us these days are lucky enough to avoid run-ins with the industrial complex of modern life. At some point, most of have to deal with things like healthcare, insurance, financial loans, government support systems, schools, and the like. However, as caregivers we practically live within these systems. And the hard, depressing truth is that many of them are not just complicated and stressful to navigate, but seemingly devoid of humanity.

In any given day, a disability parent like me might have to text her Medicaid case manager to ask about an insurance rejection, call Walgreen’s about an incorrect co-pay, and contest a medical bill. This means hours spent on the phone listening to ear-piercing hold music, playing exhausting games of phone tag, filling out obscure pieces of paperwork with inscrutable directions, and repeating the same request to different people dozens of times. By the end of the day, these broken systems have fulfilled only one mission—they’ve broken us too.

How do the feelings of overwhelm manifest for caregivers in these situations? Here are few of the top reasons:

We do not feel valued. The doctor is only in clinic one Tuesday per month at our downtown location. I can’t fix your bill; you have to speak to my manager. Insurance won’t cover this medication until the first of the month. You have to call the main line and talk to the chat bot before you can speak directly with a human. These are a few of the issues we come across as we navigate through insurance claims, medication mix-ups, and medical appointments. And what are the lessons we learn along the way? That our time is not valuable, our wishes and preferences do not matter, and we rank low on any power hierarchy or structure.

We feel disempowered and dehumanized. Because nearly everything happens on someone else’s terms, we end up feeling not only like we have little or no control, but like we are not important, or—sometimes—even human. In the most frustrating of cases, I get the impression that the person at the desk, behind the screen, or at the end of the phone line does not see me as a person. To them I am simply a liability, potential lawsuit, troublemaker, claim number, or glitch to be fixed.

We are frustrated by complicated, ever-changing, opaque systems. In the world of healthcare, insurance, government support, and education, nothing stays stable for very long. New laws are voted into being, regulations change, insurance companies shift who and what they cover, equipment goes out of date, and people move on to other positions. In addition, in order to navigate them, these systems also often require a level of detail, knowledge, and determination that most of us simply don’t have and may not even have a way to access. Add to all this the very real disconnect that can exist between formal, forward-facing rules and behind-the-scenes assumptions, inferences, rumors, and special connections. It’s easy to see why it can all get to be too much. It can feel like a full-time job just to add your child to that state Medicaid waiver, advocate for that new communication device, or worm your way into that specialist’s office.

Everything is siloed, decentralized, scattered, and disconnected. Many of the systems we deal with are simply exhausting. We run in circles, chasing after the right person, document, phone number, or piece of information, wasting precious time and energy we could be spending on our children, ourselves, or a million other things. In fact, many companies and entities do not have a single person, resource, or office we can turn to when we have a specific question or need. And so, we bounce between different people, phone numbers, and websites in a draining and grueling game of caregiver pinball. To be fair, many of these companies, offices, and healthcare systems are simply not well designed, but their members still try to help us in good faith. However, some are built with more nefarious intent. Their designers count on wearing us down through labyrinthine bureaucracy, incomprehensible paperwork, and insurance denials. The hope is that we will give up before filing that appeal or turning in that reimbursement claim. And sometimes—understandably—we’re so tired we end up doing just that.

We die a death by a thousand details. Sometimes it isn’t one particular thing that wears us down; it’s the accumulation of all the tiny details of the caregiving life. It’s the never-ending barrage of texts, emails, phone calls, and documents we have to send, receive, email, fax, or mail. It’s the company that will not set up automatic payments, so we have to remember to call in an order every month. It’s the tiny insurance window when it is not too early to call in a refill but not too late for Walgreen’s to order more stock. It’s remembering that we can only clock in and out on the glitchy Medicaid app, but we must fix our incorrect punches through their convoluted website. These chronic micro stressors, taken one at a time, represent only tiny droplets of frustration. But when they are falling fast and furious, they can come together to create an epic deluge of stress.  

Each of the reasons mentioned above would be a cause for frustration, but, in combination, they form the perfect recipe for depression, anxiety, anger, and burnout. Yet, walking away is not an option because the stakes are simply too high. When I am sending texts, answering emails, filling out documents, or waiting on hold, I can’t help the anxious thoughts that hover at the back of my mind. If I can’t get Medicaid to approve this piece of equipment, we are either on the hook for thousands of dollars or my daughter has to go without it. If I can’t convince Walgreen’s to rush order her anti-seizure medication, JJ could have breakthrough seizures. If I don’t push hard enough in this IEP meeting, my daughter might not be allowed to learn alongside her typical peers. It’s not just that I have to navigate through these systems. It’s that I have to navigate, fight, and then win. Because if I lose, my daughter loses too.

Unfortunately, these issues are so large that they have no real solution on the individual or local level. So what caregivers can do in all our copious free time (insert sarcasm here) is to advocate at the city, state, and federal level. We need to speak out about the ways in which things could be improved for ourselves and our children. Many disability parents do just this, and I have great respect for their dedication, perseverance, and hard work. However, if you’re not able to enact higher-level change or don’t have the energy for advocacy work, there are still things you can do to make the world a better place.

My favorite way to enact positive change is to pay it forward. Over the years, many medical parents have talked me through systems that were new to me, shared their letters of medical necessity and insurance appeals, and encouraged me to continue pushing when I wanted to give up. Now that JJ’s health has stabilized and I have been in the disability parenting world longer, I finally have the knowledge, time, and energy to do the same. I enjoy empowering newly-diagnosed families with knowledge about how Medicaid works, emailing them examples of our successful insurance appeal letters, and offering words of support. And while it might not be the systems-level change we all so desperately need, it is still impactful. When I am helping my fellow caregivers, I find meaning and purpose that stretch well beyond the frustration of my experiences. And, perhaps most importantly, I feel less like a helpless cog and much more like a living, breathing human being.