That Costs Money, a LOT of money
Everything costs money, we get that but when we look at complex medical conditions and bankruptcies, we know, having a chronic condition costs more money than most can imagine.
Everything has a price, everyone deserves to make a living, all should be compensated for their experience and genius. We understand and support these ideas, of course, this is America after all. But … (pity party warning trigger)
When you are faced with a medically complex condition and need help to recover, money is the only avenue you have to access the level of care necessary to reach that recovery. Alternative doctors and practitioners are outside of the mainstream, the time they spend with you as a patient means that the service charge is likely going to be more money than insurance is willing to compensate. This eventually equates to more money than most people have access to, and more money than most people can really spend. Even if in the beginning you have a buffer, retirement, savings, 401k, equity in the house, eventually even those money sources are going to be tapped out.
“Medical bills were the biggest cause of U.S. bankruptcies, according to a CNBC report. It estimated that 2 million people were adversely affected. A popular Facebook meme said that 643,000 Americans go bankrupt each year due to medical costs” according to an article by Kimberly Amadeo Although further down she writes: “Researchers disagree on how many medical bills cause bankruptcies.” and it goes on to state several reasons why this might be true or not.
Staring down the abyss of no return
For us, while we are not bankrupt, the daily grind of trying to keep up and trying to work within the confines of a complex condition is carefully considered. Our lifestyle means that every cleaning product, every food item, every supplement has to be carefully considered. Organic quality food, non-toxic cleaning products, dehumidifiers, laundry detergent, every single thing has to be thought about, researched, managed and paid for, usually at a higher cost than the crappy version everyone else gets to use instead. It feels like everything we need is more expensive. Take medication: We can’t just use the generic, available quickly at any pharmacy chain in the world medications, nope, not us. We have to source the more expensive, compounded medications. Why? Because we need to avoid fillers, dyes, and chemicals wherever we can. We live a lifestyle that mandates we avoid the triggers known to cause behavior or those things that are genetically modified. Even something as simple as laundry detergent – we are always going to choose the non-toxic, no dyes, no perfumes versions because once again, we are avoiding anything that might trigger more behavior than we care to manage. Beef – we are choosing the grass-fed, organic cuts every time. No corn-fed cow for us. Eggs, free-range, non-corn fed. Pasta – more expensive, organic, rice pasta because we react to gluten. Toothpaste – no-fluoride, no additives, no fillers, no sodium lauryl sulfate (SLS). Every. Single. Item we buy, we need to think ahead.
So when you look at our actual insurance spending it looks quite the same as everyone else. The copays and reimbursements from the insurance companies (and those in charge of writing off debt) will see an amount and feel confident that perhaps our medical debt is simply something we lost control of (amongst other spiraling debt responsibilities). But, it is far more complicated than that. This isn’t about the lack of insurance coverage (well it is that and more) but when our doctors don’t take insurance, and we also require more visits over a year than is typical, factoring in the hidden costs I mentioned above as well as other things like travel costs, tutors, respite care, house-proofing, mental health, it all adds up. So while it can’t technically be considered medical debt, that’s where the money is spent due to the complex medical condition we are dealing with.
Before we had a chronic illness, we went to the doctor maybe once or twice a year but now we find ourselves regularly driving an hour or more to find someone who understands. We do this several times a month, with no insurance coverage and blind faith it will be worth it in the end. It’s all these little unseen things that sneak up and before you know it, your payment plans are more than your monthly income.
We have good reason to be sad
I am sitting here lamenting on my lack of motivation, and realizing why my heart aches over our financial situation today. It really isn’t because we are broke or because we are living life on a payment plan. It’s not even that we are looking at retirement with significantly less than we planned, it’s the notion that without money we have limited choices. Without money, we are relegated to working with doctors who believe (more often than not) that psychiatric conditions are simply lifelong chemical imbalances. Without money, we can’t access alternative care. Without money, we are potentially sentenced to fighting denial. Without money, we can’t buy time for recovery. Without money, we have to accept we may not ever even get to recovery. Instead of working on solutions, we will be working on medication choices. Instead of looking for triggers, we are looking for side-effects. It is too harsh a reality to accept.
I, like many others, have worked hard to solve this. I have volunteered, I have advocated, I have begged, I have written thousands of words. I never quit! but my hard work, my tenacity, much like my kid’s medical situation, has resulted in limited solutions. I haven’t been able to reach that “one” doctor. I haven’t been able to connect to “that” network. I haven’t been able to work “that” contact. I haven’t been able to find that “someone” who will work as hard to recover us, as we have worked to educate the masses. I feel we have failed.
But that’s just today, today I feel disconnected, I feel out of sorts, I feel sad for us all, but writing helps. Getting it out of my head and onto the virtual paper here makes me feel better, helps me rationalize and helps me realize – giving up is never an option. Life is moving on, science is moving on, we can either embrace the journey or stop living with hope. So, as always… onwards and upwards, our next intervention awaits.