Struggling to Stay Alive

As some of you follow me on Twitter, you’ve probably noticed some of my “rage tweeting” recently over some frustrations I’ve encountered with the healthcare system. Over the past almost 6 years of living with Stage IV Metastatic Breast Cancer (MBC), I’ve noticed that things usually work pretty well for a while but then there are these curve balls, bumps, challenges that make this living while always in treatment a much heavier lift. And yes, I totally understand that I tend to get obsessive about trying to understand and fix the brokenness, which then feels overwhelming because our system is so broken and it’s all just a little worse. Those rabbit trails are well trod at this point for me.

When I encounter frustrations and inefficiencies, my instinct is always to break down the flow, assign responsibility, and strategize on how to avoid issues in the future. This effort typically carries me through the initial encounter and keeps my focus (sometimes intensely) for a time until the urgency of the situation has been corrected/addressed. As with most things, I am usually able to compartmentalize many of the feelings that arise around this effort in order to get to a solution. Serves me well in the moment since my first and primary goal is problem solving.

Once that dust has settled and the initial struggle has subsided, that’s when the emotions that are stirred up hit me like a tidal wave. And these tidal waves are often larger than I anticipate. Feeling as though I must struggle so much just to stay alive takes a much larger toll on my energy than I often think it will and let’s just take a moment to appreciate that it can be a huge struggle to simply stay alive.

It’s hard to feel as though I must justify over and over to others what it takes to keep me alive, that I’m worth that effort.

It’s hard to feel as though my situation is so complicated that no one wants to deal with it, that so many rush to get me off the phone rather than really truly ensuring that a problem has been corrected.

It’s hard to see front and center over and over how complicated systems are and how the needs of patients are almost always last.

It’s so hard to see front and center over and over how the healthcare system is set up to make a PROFIT off of the suffering of human beings, that the harm and sometimes death to patients is just a factor built into the process.

It’s really really hard to deal with people who demonstrate very little care in actually making sure that their job is adequately done, not just checking a box.

It’s really hard to experience systems that ignore and marginalize the needs of the most needy patients over and over and over.

It’s really hard to be lied to over and over, directly and indirectly.

It’s really hard to have to double and triple check the jobs of others because they aren’t double and triple checking.

It’s really hard to have to explain over and over how the end result of whatever is going on is going to affect me (and any other patient similarly situated).

This is hard stuff.

And this hard stuff is a regular occurrence in my world. If I was only having to encounter this craziness once in a blue moon, that would be one amount of stress, but when this happens over and over, it gets old super fast. After nearly 6 years of constantly encountering the problems, I’m tired. I’m so tired.

I’m tired of having to ask the specifics of people’s jobs so I can be sure they have done them.

I’m tired of having to get an education on the computer systems I have no access to in order to figure out how to make sure the system worked properly or correct a problem that has occurred.

Yes, I’m tired of feeling as though I have to do someone else’s job or sometimes a lot of someones.

I’m tired of having to watch like a hawk to ensure that my insurance plan is followed and that I’m actually getting the benefits we pay for.

I’m tired of having to explain over and over and over that I have to do certain things or take certain medicine just to stay alive.

I’m tired of having to ask over and over for basic accommodations because I am immunocompromised and I’d really like not to die from germs that others are spreading without regard to anyone else.

I am tired of having to be on alert and careful to protect myself 24/7 365.

This living with a terminal diagnosis thing is HARD and knowing that it won’t end until MBC ends my life doesn’t make it any easier. What sometimes makes this living with MBC thing untenable is when the healthcare system makes life so much more difficult and I’m stuck receiving care from a system with the deck stacked against me.

I don’t have a solution and I don’t have it in me right now to come up with the steps to fix these things. As a patient, I spend a lot of time trying to ensure that my various medical providers have all the information they need. I spend lots of time ensuring that my lists of medication are correct and different specialists are consulted at the right time. I spend lots of time keeping track of prior authorizations and refills on prescriptions. This is my life and I will do what I need to do.

At the same time, we need help.

Those of us who encounter the struggle to stay alive over and over and over, we need help. We need people who pay attention to sending information to the right fax number and call to follow up that the information arrived at the right place. We need people who will pave the way for that appointment that we need in order to maintain even a basic quality of life. We need people who will think ahead about those things that just might make life a little easer like offering a safe space to wait for a necessary appointment where we are safe.

We need help because none of us can do this living while dying thing alone.