Chronic illness comes in many shapes and forms. While each have their own characteristics that make them unique, I will be speaking about what I have experienced while living with my wife, a.k.a Chronically Carly.

Our story starts off as any cute couple story does in college. We fell in love, fast, but we were with other people. When we were finally able to date each other, it was a whirlwind of adventures and deep conversations. The greatest thing about it all was that we were friends first, which meant we just were hanging out with each other. We would fill our days with hikes in the woods, beach days, working out together, and getting food at the local co-op and going to eat in the park.

Eventually, we finished up our time in college and moved back to our own parent’s homes for a short time. Then, Carly made the amazing move and surprised me by moving to Burlington, VT. 

We went about normal life for a while, shuffling our way through multiple jobs to finally settle on the good ones, getting married in a snowstorm and started adopting more and more pets. 

Nearly a year after we were married, things drastically changed. When Carly had told me about POTS for the first time, I had no idea what it was. Through a laborious process of reading articles and listening to Carly talk about her own experiences, it finally seemed as though she had found something that fit her odd collection of symptoms. Many doctor appointments later, we finally found a doctor who took her seriously enough to consider her self-diagnosis and fully agreed with it. From then on it has been a process of learning enough to stay on top of the changing symptoms and being able to monitor each day for what it is. 

If you were to look at a snapshot of Carly’s life while in college and now, you would assume they were snapshots of two siblings who went their own ways. Sure, they have a fair amount in common, but at times their ways of living couldn’t be more opposite. Along with this, my own life needed to change in order to match some of the limitations chronic illness put on Carly’s lifestyle. 

Only after a full year of knowing what Carly is up against, and with the help of this lovely worldwide pandemic that we are all going through, have I come to realize just how much chronic illness changes someone’s life. 

Lesson one. It’s important to realize that just because you are not doing something to the extent you want doesn’t lessen its validity. Carly and I love hiking. We would spend every minute in the woods if we could because of the calm that it brings us. However, there are now times when the one mile walk down to the lake is a bit too much for Carly. We adjust, and can usually get some salt or electrolytes in her and then make it on a short lap around our apartment complex with the dog. 

Lesson two. We take our good health for granted. I am lucky enough to have a body that isn’t trying to fight me in some way each day. This is definitely something I now feel grateful for, especially during our days of quarantine. I am the grocery shopper for the indefinite future, which is absolutely fine since I happen to enjoy a good trip to the grocery store. Something as simple as picking up a virus from the grocery store could exaggerate any number of Carly’s already constant symptoms. This means I need to take extra steps to keep things clean and sanitized around our apartment, not necessarily for me, but for her.

Lesson three. Learn to enjoy relaxing. This is one I have never been good at. In the early part of Carly’s journey to being diagnosed with POTS, this definitely had an effect on both of us. I would feel restless when staying home if she couldn’t go out and do something with me. She would feel as though she were holding me back and letting me down all at the same time. Recently, I have found myself in an incredibly fortunate position where I have time to practice relaxing. Focusing on being together, regardless of what we are doing, has put Carly and me on a positive path where we are able to leave the restlessness and the assumptions behind to focus on being together.

I’m positive that my learning hasn’t reached its end and my abilities to help Carly will continue to get better. The most important thing that I can remind myself of and pass on to others who find themselves in both mine and Carly’s position is, no one asked for it. I have yet to hear about one person who really wished they had a chronic illness and thought that having one would change their lives for the better. Whether you have it or not, you still may be living with it. The only thing to do is to adapt. 

This blog was written by Quincy Chandler of VT.