My life partner (a term I use because saying “boyfriend” makes me feel 15) and I just finished our monthly discussion of our household finances. Well, it’s really more of a ritual discussion of our lack of funds and a run-down of different possibilities to prepare for, including, but not limited to: praying to the gods of money, planting some pennies to see if they grow money trees, or running into the social security office shouting, “will somebody please approve my disability case!” I’ll keep you posted on how those ideas turn out…but, in the meantime I wanted to share with you all the reality of trying to survive with chronic illnesses and low (to no) income.
Matt truly is my partner in life. We have already sworn our lives to each other, including all the difficulties. We had been together for just over a year when POTS (postural orthostatic tachycardia syndrome) hit and disabled me. Since then, he has taken on extra duties in our life, such as: preparing all the meals, doing almost all of the shopping, driving everyone where they need to go, plays with our daughter while I rest, packs her lunches, gets school supplies, takes her shopping for clothes, cleans fairly regularly, gets my meds, and many other things I’m forgetting. I think of myself as incredibly lucky to have him, not because I’m a burden or less deserving of a good partner, but because I know what it’s like to have an less-than-stellar partner and I consider myself fortunate to have an amazing partner now.
As you can see, taking care of both Harper and I is practically a full-time job in itself. On top of that, Matt works absurd hours at an entry level position, paying his dues to work in the field of his dreams (heh heh), as well as part-time online work that he’s able to do from home. I’m not sharing this so you regard him as a saint, or take pity on us, but, rather, to show that health is not guaranteed and illness comes with a hefty price tag.
Dedicated readers will remember that I had to step down from my job a few months ago due to my illnesses. A year before, I had to step down from a full-time lead teacher position, to a very part-time position. When Matt and I first began dating, almost three years ago, I had moved back in with my dad to recover from a divorce and finish my Masters. When Matt, Harper, and I moved in together two years ago, we had both freshly finished school and were now starting off on our career paths. We didn’t make much, but we made due, and were even able to tuck funds away into savings to hopefully use as a down payment on a house one day. It seemed, it most senses at least, that we were on the road to the elusive American Dream.
Then I got sick.
Losing your job isn’t the only financial side effect of chronic illnesses. Even when I first got sick and drew in my regular salary, we suddenly had a new expense in our budget. An expense that you can’t really plan for as it’s demand is constantly waxing and waning depending on how it feels like acting. From January to March of my first year of being sick, I had payed out over $4,000 in medical expenses, on top of my insurance premium, that is. Thank God for the ACA’s yearly out of pocket limits, because I have met mine by March of both this year and last. This year, however, I no longer qualified for subsidies since I fell into the needs-Medicaid-but-only-if-your-state-expanded category. My state is not an expansion state. So, this year I accrued around $8,000 of medical bills, outside of the cost of premiums, by March.
You may be asking, “how does someone accrue $8,000 in medical expenses within a few months without a major surgery or cancer?” Well, actually, you may not be asking that question if you are a US citizen, because most of us recognize how expensive even routine medical care is. My medications alone (all of which are required for me to be even somewhat functional) total well over $1,000 a month. Newer medications, fresh on the market, are the worst for the lining of your wallets. My Corlanor, which has actually helped me to be able to exercise some and stop crashing so often, is $500 a month with no alternative. There were medicines I needed but had to stop taking until I met my out-of-pocket limit just because I couldn’t afford to pay for them. Add to that $200 for each specialist visit (at least 2 a month), $500 for a bag of IV fluids at an urgent care center, 2 months of physical therapy, and three ER visits due to crashing vitals, and it’s pretty easy to see how quickly it all adds up.
This is where I’d like to point out, for anyone thinking “well, duh, that’s traditional medicine for you,” that going the nontraditional route is anything but affordable. We’ve had to get creative with meal planning due to my various dietary restrictions, as healthier foods tend to be more expensive. We try to eat whole foods whenever possible, but there’s also the disappointing feeling when your fresh fruits and veggies go bad because you were too nauseous to eat anything but saltines for half the week. When I first got sick, a doctor ran my blood through a special nutrition test to see what vitamins and nutrients your body needed supplemented. In the end, there was at least $500 worth of monthly supplements that were suggested. Most alternative doctors don’t take my insurance, but still cost between $1-200 per visit, just without the added bonus of going towards my deductible and out-of-pocket, so there’s no cap in how much I would have to spend. Even at a trendy “alternative care” IV bar, I would have to spend around $200 for the amount of fluids I would need during a severe flare, but without the ability to run tests or monitor my vital signs.
Another little known fact is that many “alternative” healthcare providers won’t take on patients with severe chronic illnesses, or will only take you on in supplement to your regular healthcare provider. I have had multiple alternative care professionals express that they either could not take me on, or wouldn’t be comfortable working with me without a relationship with my specialists, just because of the nature and scope of my illnesses. A chiropractor, acupuncturist, personal trainer, nutritionist, massage therapist…all of those may be able to help some with my symptoms, but they can’t cure me. So, they become additional costs to my already too expensive healthcare.
**It should not be taken for granted that alternative healthcare is not a viable option for many chronically ill people. Please stop shaming people for using every tool available to them to fight their illnesses, rather than just the ones you think they should use. I cannot say this enough, unless you are a doctor who is intimately familiar with our medical history, do not tell us how we can “cure” incurable illnesses or that the only reason we’re still sick is because we aren’t trying hard enough to be well. I cannot over emphasize how incredibly harmful that attitude is. It absolutely does not help anyone to get better.**
In 20 months of being ill, our income has been reduced by at least half, and we have taken on the financial equivalent of adding another child to our home. We have watched our savings go from a healthy promise, to a teasing wink. I have been incredibly fortunate to find another part time job working from home, and Matt is on track for a promotion at his job. We’re 15 months into our 2-3 year wait for possible approval of disability benefits. We remain hopeful for better days to come, and we cover each other in love and kindness every single day.
Yet, we still walk around with the weight of knowing that at any given moment I could end up needing expensive surgeries, or hospital stays, or more diagnostic tests, or any myriad of possibilities. And still, we are subjected to the cruel idea that I am a burden to society and that we are somehow lacking because we are not wealthy.
Anyone can get sick. Anyone can lose their job and their fortune. Financial status shouldn’t dictate how valuable you are seen as a human being, or what rights you are granted. The American Dream is a beautiful notion but it doesn’t take into account that we don’t all start off in the same place, nor do we all travel the same terrain to get to where we’re going. To borrow from Lin Manuel Miranda, with a slight Saidee twist: humans are human are human are human. To deny people access to fundamental human needs because they can’t afford them or are seen as somehow “less than” is immoral at best.
If you can’t work, you are still valuable. If you have chronic illnesses, you are still valuable. If you have disabilities, you are still valuable. If you are gay/straight/bi/trans/black/white/world citizen/any other qualifier you can think of…You. Are. Valuable.
And, I see you. I hope you see me, too.
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