I think the majority of Americans can agree that many major illnesses, let’s say like cancer, can be expensive. Even with insurance. There are many things that insurance won’t cover and even the best insurance can leave a person struggling. I had a friend who passed away from breast cancer recently, and some of her treatments, for shots alone, were in the thousands of dollars. I remember we had a go-fund-me page for her so people could donate and help her out. I don’t think many people understand the expense of chronic illness. People don’t understand chronic illnesses well enough to be able to attach a cost to it and sometimes the expense isn’t doctor or insurance related. It’s in the pursuit of things to make us more comfortable that begins to rack up the cost or, in the loss of time at work if you have to miss days or, groceries purchased with all intentions of cooking but are unable because you aren’t well.
The expense does begin with doctors. The complication of insurance. Things they will and won’t cover. Things they used to cover but for whatever reason now, only cover 50%. Sometimes I think those of us with chronic illness should also take some kind of crash course in insurance just to be able to make heads or tails of it. I wanted to come up with an estimate but sadly, it really does fluctuate. What I spent this month or even this year on doctors and tests may not be what I spend next month or next year because it depends on how I am feeling or even the meds I am taking. An example of this is the Tegretol I was just put on to manage my OCD, Restless Leg and Seizures. I need blood work every 3 months to monitor the levels to be sure it isn’t killing my liver or damaging my bone marrow. I only just started taking this about 2 months now, and my insurance only covers 50% of the blood work. So that will be an added expense I did not have before.
Now, doctors and blood work and other random tests aside, there is the private expense of products in hopes that it might make us more comfortable and ease the symptoms of chronic illness. I’ve probably purchased hundreds of dollars’ worth of products in this last year alone with the grandiose hope of easing my symptoms. Everything from bath salts, to creams and balms, pillows (I have an insane number of pillows and I know my husband thinks I am crazy); a heated blanket that I do not use to cover myself with but to lay on so it acts as a giant heating pad and additional heating pads and let’s not forget the other random things like allergy creams and eye drops and various teas to help with chronic symptoms, the list goes on. Much of what I purchase is holistic in nature. I’ve had very high hopes of making my own products for aches and pains and itchiness but let’s face it, there are many times I can’t even make dinner and am grateful for the fact I cook for an army so there are often left overs when I can’t muster energy to cook. I haven’t given up the dream yet and I figure if I can plan it out well enough maybe I can still.
Oh! And clothes! How many people who don’t have chronic illness or pain realize that many of us require special clothing too? I don’t mean like compression socks either. I’m talking about every day clothing, from bras to undies to shirts and pants and even shoes. Everything I wear has to be light and soft. I have not work jeans in two years because the weight of it and texture of them hurt my skin. For awhile I could get away with jeggings, but then I couldn’t tolerate those either. So, I have like 15 pairs of jeans and jeggings combined that I can’t wear and refuse to sell because I hope I can wear them one day, in my closet. Instead, I live in leggings and joggers and soft t-shirts and light weight, barely-there undies, because even underwear will bother me. And don’t even get me started on bras. I haven’t worn an underwire, back clasping bra for even longer than I haven’t worn jeans. My saving grace has been bra-letts. Best invention ever. My point here is that we incur cost in so many areas beyond medical, just in an effort to make our lives more comfortable and manageable.
I mentioned time off from work, but what about when you can’t work at all? That is a huge loss! It is a huge financial strain when it’s a two-home income, but what about if you are single and what if you are a single parent needing to provide for children? Suddenly you are not only distressed about your health but distressed about finances and the basic ability to keep food on the table for yourself and children. And we all know stress is horrible for chronic illness. While I do not claim to be an expert in disability, I am fighting for disability in my home state of Texas. If I were single with my children to take care of it would not be possible for me to even contemplate disability as Texas requires proving you have been out of work 6 months due to your disability. I don’t even know how this is possible. How you would pay rent and pay utilities and maintain a vehicle and buy food (and let’s not forget medical insurance) and all the other things that go along with providing for a family if you can’t work while seeking disability. I am beyond lucky that my husband is able to work and care for us all. However, I am very keenly aware of the hardship it places on him though he never complains. We get by, but some months it is very hard and we have to sacrifice a lot. I stress out about finances all the time and again, my husband is there to remind me that we will be okay.
My final thoughts: chronic illness/chronic pain is expensive and it sucks being sick. You are never able to just think about yourself because there are so many things that your being sick, affects. It’s a constant vicious cycle of expenses and a constant worry of “where am I getting the money for this,” and an ever-fretting over how much your significant other (in my case) is having to work to pick up the slack for you and feeling guilty because of it that- it’s exhausting. And if you are on your own, I can only imagine the worry is amplified. Being sick is expensive and it doesn’t look like that is going to change any time soon.