One of the hardest parts of living alongside an invisible complex chronic illness is the number of decisions that I need to make every second of every day without a road map. The level of uncertainty I live alongside of on a daily basis would take most people out. Robert Groysman, MD, recently asked his online community to describe what it feels like to live with the uncertainty that comes with Long Covid. Here was one person’s response, but the same response can be applied to many different complex chronic illnesses:
Fortunately, since I have done the work to expand my window of tolerance for uncertainty, I have become very good at living alongside the huge amount uncertainty associated with many chronic illnesses. According to the people in our inner circle who are active participants in our daily lives, I am doing an excellent job. However, it doesn’t mean that it is easy. I continually work at expanding my window of tolerance so that I can keep living my life right alongside the uncertainty. At this point in my life, it takes a lot for me to feel the weight of the stress and uncertainty. In fact, when I was wearing a smart watch in July, I was handling stress in such a healthy way that the watch thought I was napping at various times throughout the day when I wasn’t napping at all.
Even though I am really good at living alongside the uncertainty, I still have a limit just like everyone else. On days when the decisions are especially heavy and the choices are the most difficult, I feel it. On the days when it seems like I have made the wrong choice, I feel it. The doubt can start to creep in for even the most sturdy and self-confident people. There is no way around doubt when so much uncertainty is involved.
On the most difficult days, when I start to doubt myself and use hindsight to judge any number of my previous decisions, my husband is quick to remind me that I often haven’t had any good choices on this health journey. I have had to make decisions with many missing puzzle pieces. He has seen all of my decisions up close, and he always reminds me how impressed he is with my ability to keep making the next right decision. And, even though it is understandable, it would be unfair of me to judge my previous choices using my current level of knowledge and understanding.
Rabbi Steve Leder, a widely respected and influential rabbi in our country, recently reiterated what my husband regularly says to me. He was speaking to a woman who lost her spouse after having to make a significant amount of medical decisions on her spouse’s behalf. Here is what he said to her:
“So many of us were raised to believe that if we make the right choice, it’s going to be a good outcome, and if we make the wrong choice, it’s going to be a bad outcome. I know what you went through. You didn’t have any good choices. You had bad choices and worse choices. That is really the truth of so much of life. Very often, you make the right choice, you have a bad outcome. You make the wrong choice, you have a worse outcome. Very often, we have bad or worse. [After the fact] it feels like we did something wrong or made the wrong choice [if the outcome is bad]. And, it’s just not true.”
I think this is the reason why receiving judgment and criticism on this health journey can be so painful at times. Most people have no idea what it is like to be in my shoes. They have no idea what it feels like when your life is on the line and you only have bad choices and worse choices.
Rabbi Steve Leder’s words were helpful for me to hear for two main reasons. One, it reminded me of how grateful I am to have a husband with some of the wisdom of a widely respected and influential rabbi. 🤣 And, two, it reminded me of what I need to remember on the days when hindsight is the loudest voice in my head.
Brutal. Walking through a (figurative) minefield without a map. Having to choose between bad choices and worse choices. Receiving judgment and criticism from the outside world. Days when hindsight is the loudest voice in my head.
Beautiful. Doing an excellent job of living alongside an abundance of uncertainty. Continuing to make the next right decision when the only choices are bad choices and worse choices. Having a husband with some of the wisdom of a widely respected and influential rabbi.
Just another day of . . . This Brutiful Life: The Brutal & Beautiful Moments of My Life.
