When Your Chronic Illness Means Your RSVP Is Often ‘Maybe’

When I was first diagnosed with postural orthostatic tachycardia syndrome (POTS), I never knew what each day was going to hold. Maybe it would be a good day and I’d be able to go a few places, or maybe just one. Maybe I wouldn’t feel good enough to go anywhere, but I’d feel good enough to do things around the house. Or maybe I wouldn’t even feel good enough to get out of bed. Maybe, maybe, maybe. So many maybes! But if you deal with any kind of chronic illness, you know that “maybe” becomes a very familiar word when it comes to making plans.

My husband Greg also has to deal with the unpredictability that is my life. There have been many times we had to put off trips to visit his family, who live six hours away. It’s always a wait-and-see kind of situation. Usually how I feel determines what day we leave. Greg and I have missed out on family events, movies, cookouts and concerts. We’ve wasted time and money in some cases due to me not feeling well.

Dealing with a chronic illness is so unpredictable. Our symptoms can vary and change day to day, hour to hour, even minute to minute. Just because I did something yesterday, that doesn’t mean I can do it today. Usually, it’s the opposite. I’ve also had people tell me to rest when I’m going to be doing something more active within a couple days. However, it doesn’t work that way. I can stay in bed all day to try and save my energy, and in the end it doesn’t matter. If I’m going to have a bad day, I’m going to have a bad day. Nothing can really prevent or predict it. There are times I push myself to the extreme thinking in a day or two I will pay for this. And usually I do. However, sometimes I get lucky and nothing happens afterwards. I still feel OK. Then there are times when simply going out to eat can do me in for days.

Personally, I’ve come to the point where I like to push myself. I spent over a year and a half when I was first diagnosed being stuck at home, mostly in bed, only going out for a trip to the doctor or hospital. That’s not at all how I pictured my life to be at 21. I desperately wanted to go places, to see new things — to just experience life! But I physically couldn’t. Now, six years post-diagnosis, I’m still limited in what I can do. But overall, I have improved. So when I can get out and live a little, I like to promise that little word — “maybe” — and set my mind on making it happen. Whether or not it actually does happen, or go as smoothly as I hope, is another story. But I do like to try.

Even though we’re dealing with an illness, we still have the same desires, hopes and dreams we had before we got sick. That doesn’t all just go away. We’re still the same people, but our bodies can make it nearly impossible at times to live out those dreams. It’s not easy for us to accept our limitations. So we usually end up pushing ourselves to the extreme in order to do the things that we want or have to do and then pay for it afterwards. It’s a very delicate balance that I myself am still trying to figure out.

I’m encouraging people on both sides to take a look at the bigger picture. To people who are dealing with an illness: Take care of yourself first. Explain to others what you’re dealing with and why you may not show up to something. While they may be upset if you have to back out, I feel like it’s better if they know the circumstances so they are clued in as to why you might not be there. For friends and family who know someone who is dealing with an illness: Take the time to understand what exactly they are dealing with. Try not to get angry or irritated. Chances are, we already know you’re disappointed — which is totally understandable, and we are, too! This little hiccup is what we often deal with on a daily basis. When making plans, if we throw out a lot of “maybes” and “ifs,” show up late, or not at all — please don’t think we don’t want to be there or are being flaky. We’re sick, and if we had any control over our bodies, the maybes and ifs probably wouldn’t even be in our vocabulary!

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.