The Invisible Burdens of Chronic Illness
Rheumatoid arthritis is an invisible illness. Most of the time, the impact that RA has on my daily life isn’t visible to other people. However, once someone learns that I have RA, I think they can at least try to conceptualize the impact that pain and fatigue have on my daily life. Someone without RA may never truly know the full extent of these physical burdens, but most people understand what it feels like to be exhausted or in pain, so at least they can try to come close.
But most people do not realize that there are other burdens associated with living with a chronic illness – like the investment of time, energy, and money that goes into attempting to maintain my health.
For example, one morning while I tried to clean up from breakfast and keep my children from hurting each other as they fought over some toy train tracks, my husband and I got into an argument about yet another medical bill. We were arguing because the bill was difficult to understand, as they always are. Since our health insurance comes from my husband’s employer, I needed him to get me some information to help me figure it out. My husband was at work and hadn’t found time to get me the information, which is why we were arguing. Over text message. Which, as an aside, is not a way I recommend arguing with your partner!
That same afternoon, I sat down during the single, golden hour where both of my children nap at the same time to call my insurance company. While it is annoying for anyone to have to spend time talking to their insurance company, you probably can’t understand what a sacrifice this is for me unless you are a parent yourself. Most days I am the sole caretaker of a pair of toddler boys, ages 3 and 1. They are rambunctious. They get into trouble. They require my constant attention and, on most days, more energy than I actually have. The single hour a day where they nap simultaneously is the only time I have to myself. To think. To take a deep breath. To drink my tea while it is still hot. To pee alone. But it is also the only time I have to get things done.
It took over an hour for the representative from my insurance company to offer me an explanation that made a modicum of sense. Though I had logged into the “member dashboard” and had several bills in front of me, it turned out that the representative was not able to log into my account to see the same thing I was looking at. For some reason, she could also only see medical charges that had gone towards my deductible, not prescription charges. For that info she would need to contact another department, and that would take 48 hours. So we had to make do with her attempting to answer my questions while we looked at different information that was apparently incomplete.
In the end, it turned out to be pretty much a waste of my energy and precious childfree time. But medical bills make up a huge portion of our family’s budget, so I keep careful records. It’s not even the end of the year yet, and we have already spent almost $12,000 on medical expenses – not including our premium payments. Though we are a family of four, 80-90% of the money we spend on medical bills goes to taking care of my chronic illness. I know I have to do my due diligence when I have a question about billing to make sure that the large sums of money we fork over for my medical care is actually being spent and credited the way it is supposed to.
I try not to think too much about how much easier our day-to-day lives would be if we had an extra $1,000 a month to spend on whatever we wanted. Instead I clip coupons for our groceries. I shop for our boys at consignment sales. I almost never buy anything new, especially for myself. I spend my extremely limited time and energy wading through medical bills and fighting with my insurance company. These burdens – time, energy, money – are invisible to most people, but to my family they are simply part of the reality of life with a chronic illness.
How often you do experience an unexpected boost of energy?