The Hidden Costs of Chronic Illnesses
Trying new products constantly
I’m constantly looking to try any new products to help my pain. I know I’m not the only one in this boat, too. Anything, and I mean ANYTHING to help reduce my symptoms is something I will spend money on.
I also have about 5 hot packs as well as a heating pad and heated blanket. If it has the word “heated” in front of it, you know I’ll buy it. Heat is my best friend, as I’m sure it’s most of ours. I’ve spent a lot of money on heated products since becoming sick and having constant pain in my body.
Over my years of having AS, I’ve had to cancel or shorten some of my trips. Usually, when this happens, it comes with a cost. The odd time it won’t, but most of the time it does.
AS is a very day to day disease. Every day is different, so when planning a vacation, you never know what you’re going to be like when the day comes. Sometimes I’m flaring, sometimes I’m too fatigued. Either way, I may have to cancel if my symptoms are too severe.
The same goes for cutting a vacation short. Sometimes a flare will happen during a vacation, or sometimes just being away from home fatigues me too much. If either of these things happen it’s difficult to fully enjoy the rest of the trip.
Sometimes I have to cut the vacation short a day or two if it’s not too far away from home. If I’m somewhere I flew, then I have to just suck it up. But sometimes I have to pay for nights in a room that I’m not in, and just live with it.
I love concerts. They’re one of my favorite things in the whole world. Seeing someone play the music I love, live and in the same room as me is something I’ll always love. Since I got sick the number of concerts I go to has gone down considerably.
Standing for hours is something I just can’t do anymore. It hurts my hips and my legs stiffen up and it becomes hard to walk. If I’m flaring there’s no way I can go to a concert. I have to (sadly) pass it up and let the ticket go to waste. Like I said, AS is a very day to day disease.
Luckily, I don’t spend hundreds of dollars on concert tickets, but money is money. Especially when you’re not working.
The price of comfort
We all know comfort is important. I’m not a driver so I use public transit a lot. Sometimes public transit is hard to use, though. The seats aren’t comfortable, travel time is long, and it’s just difficult to do some days.
I’m definitely guilty of calling an Uber when I don’t technically need to. It may be a 20-minute walk, but a 3-4 minute drive sounds a lot nicer. Especially when it’s cold out and I’m already uncomfortable. It may cost a lot more, but it’s being comfortable vs. being in pain and having a longer travel time.
What are some of your hidden chronic illness costs?
Do you use the word disability to describe your AS?