Your story matters too! If you are a fellow patient, I invite you to use my personal referral link to join Pinpoint Patient Recruiting. Pinpoint connects patients and caregivers to meaningful research opportunities where your real experiences help shape the future of healthcare — and you're compensated for your time. The Chronic Illness Time Warp I’ve been thinking about the best way to explain my relationship to time and how chronic illness has affected it. A topic that has come up a lot in recent months, in various settings. But, at first, I struggled to articulate my viewpoint. I thought about how it causes time dysmorphia by bending, warping, and distorting my perception of time. I pondered the idea that time flies when you’re having fun but high school science class felt like it dragged on for hours (with apologies to those of you who liked high school science). I mused about how the best vacations are the ones when you lose track of the day and date. I considered that summers feel quick but winters feel long and that the older I get, the faster the years seem to pass. I even got “Let’s do the time warp agaaaaaiiiinnnn….” stuck in my head! But none of those concepts quite seemed to nail it. Then, it hit me. Chronic illness is like a remote control for my life; it is dictating the time and speed at which I experience everything, just as I do to my favorite series when I’m watching tv (and yes, I am a person who still watches a real television). No matter how much I try to steal that remote away from chronic illness, take back control, and change the channel, it holds on like the jerk of a couch potato it really is. When I thought about time through that lens, the effects of chronic illness became clearer: When Chronic Illness Presses STOP To me, the most obvious example of chronic illness pressing the STOP button on the remote control for my life is when I’ve been hospitalized. I’ve had a few lengthy hospital stints: 9 days for open-heart surgery in 2016, and 54 days at 3 different hospitals with my neuropathy in 2019. A few shorter stints of 1 to 3 nights have been sprinkled in as well, but it’s the longer stays I’m referring to as a full STOP here. In the hospital, time slows and becomes amorphous. Every morning, a nurse comes in and writes the day and date on a dry erase board because patients are unlikely to have that awareness otherwise. It feels like nothing exists outside the hospital, which has its own eco-system. A constant parade of doctors, nurses, and phlebotomists pass through on their own schedule, which has nothing to do with the waking and sleeping hours you would choose for yourself. It’s disorienting! You can’t go to work. You would be unlikely to leave of your own volition. Everything else around you has ceased. That’s definitely how I felt in 2019. The whole summer passed me by, while I just went through the same hospital routine day after day, inside a room without much natural light to help my circadian rhythm kick back in. Time basically stopped and became irrelevant. When Chronic Illness Presses PAUSE More often than not, my chronic illness remote control doesn’t hit the STOP button, saving that for only special occasions. Instead, it most frequently hits the PAUSE button. In a recent Note, one of my fellow chronic illness Substackers, You Don’t Look Sick, Ang, wrote: I think one of the hardest parts of chronic illness is that life doesn’t pause while you’re recovering. The laundry still exists. The emails still exist. The kids still need snacks. You just learn to keep moving a little differently. This really resonated with me. We may be on PAUSE, recovering from a flare, focusing on medical appointments, researching symptoms, and trying to rest, but the world is still going on around us, and we have to find ways to manage that disparity. When Chronic Illness Presses FAST FORWARD FAST FORWARD might be the scariest button on my chronic illness remote control. Before I had open-heart surgery, I was so symptomatic that it felt like everyone and everything around me was racing by in FAST FORWARD, but I couldn’t keep up. I was so terrified to have the surgery that I let it grind my life to a full STOP. I didn’t know if I would have more time. But once I survived the procedure, I had no plan for the time I gained afterwards. While I recovered, everyone and everything around me raced by in FAST FORWARD once again, until I could finally get back on track and catch up. When Chronic Illness Presses AHEAD 30 SECONDS Admittedly, the remote-control button to skip AHEAD 30 SECONDS is my favorite. It allows me to skip through commercials on recorded programs, thereby saving time. I actually wish my chronic illness remote control would push this button more. Could it help me skip over a moment of intense nerve pain to reach a moment of relief? Or skip past my next ICD (Implantable Cardioverter Defibrillator, which is both a pacemaker and a defibrillator) replacement surgery and go straight to recovery? I wouldn’t mind! A 30-second jump feels much more manageable and selective than a full FAST FORWARD, which allows time to escape quickly. When Chronic Illness Presses BACK 10 SECONDS While these last two buttons focused on the forward momentum of time, chronic illness is more commonly known for its backwards trajectory. The BACK 10 SECONDS button is like a minor setback. One bad day of symptoms. A single migraine, a day when I have shortness of breath, or one with intense nerve pain. Not a full regression, but rather a moment of discomfort that catches your attention and causes a brief time lapse. When Chronic Illness Presses REWIND The REWIND button, on the other hand, is chronic illness’ way of turning back time. Usually in the form of a bigger setback. For example, a few years ago, I thought I was making good progress transitioning from my walker to a cane, so I decided to go run an errand with just the cane. I had my small purse backpack on my back and the cane in my left hand, as I strode through the living room towards the garage to get in the car. But the grippy part of the sole of my shoe caught on the tile floor, and I tripped. Although I somehow prevented myself from falling, I landed on my left foot, bent in a way that I instantly knew something was wrong. Sure enough, I had broken both a toe and part of the metatarsal bone in the foot itself. The podiatrist put me into a walking boot and sent me straight back to the walker to ensure my balance. A REWIND indeed. When Chronic Illness Presses RECORD A moment is frozen in time when chronic illness presses the RECORD button. If we are willing to go back and look at the recording, it can offer us a new perspective. When I take a moment to reflect on the moments recorded and etched into my memory from throughout my time managing multiple chronic illnesses, it helps me find meaning. It also helps me to see the overall trajectory and not to focus as much on the individual moments, especially when they have been difficult. Above all, the saved moments help me to become a better person, learning and growing as a result. When Chronic Illness Presses PLAY PLAY is the mode in which we’re able to go about our daily business. It’s the average day with all the chronic illness effects managed as best they can be, alongside our regularly scheduled programming. But my PLAY mode now looks much different than it used to. A few months ago, in her Health Story Collaborative group “Writing for Expression and Connection,” Jen Crystal gave us this writing prompt: How has your relationship to time changed because of your illness? As you may remember, Jen and I spoke earlier this year for my Interview Series about her book, “One Tick Stopped the Clock.” Like the title suggests, she too experienced the stoppages, pauses, rewinds, and fast-forwards of the chronic illness remote control during her battle with Lyme Disease. When Jen posed this question, I was thinking about time as it used to relate to my workaholic tendencies. But I think my response to the prompt is evidence of how my standard PLAY mode has been altered in the face of chronic illness. Here is a lightly edited version of what I wrote: Before multiple chronic illnesses changed the trajectory of my career, I was a theatrical Stage Manager. In this coveted role as the point person on a play or musical, I had a multitude of responsibilities. But one of the most important was to keep rehearsals and performances on a tight time schedule. There is a phrase we used at the theatre where I worked the longest: ‘The Stage Manager’s watch is G-d,’ we would say. For example, if an actor thought they were on time but my watch said otherwise? They were late. If the show was supposed to start at 7 minutes after the hour, we started at exactly 7 minutes after the hour, according to my watch. And so, I prided myself on having the “right” watch for the job. It had to have the “right” face and the “right” numbers to see them in the dark lighting of the theatre. If it were to rule us all, it had to be worthy. Now, after a decade away from my life in the theatre, as I manage my health, I adhere to time less strictly. Don’t get me wrong. I’m still punctual. But I set the alarm less often. Don’t oversee anyone else’s time schedule. In fact, when I type on my laptop keyboard, the face of my watch rests on a magnet. The longer I type, the slower my watch becomes. Lagging behind by 3-5 minutes doesn’t worry me the way it would have in the past. I just re-set my watch every few days and move on. My, how times have changed. The thing is, with chronic illness in charge of the remote, I can’t change the channel. I can’t take the batteries out and start over. But I will keep finding new ways to manage how my perception of time is bent and adjusting to every press of a button. Each issue of “What’s Her Problem?” includes questions for fu
