Coping with Chronic Illness: Redefining the Meaning of Recovery
Updated: Aug 13
If you’re new here, let me put this article into context. A bit over three years ago, I was diagnosed with Lyme disease and two co-infections. By the time I was diagnosed, my tick-borne illnesses had become chronic. Ever since, I’ve been seeking recovery from Lyme disease. Learn more about my story with chronic Lyme disease here.
Today I want to dive into an idea central to living with chronic illness: the goal of recovery.
Healing from chronic illness means something different to each person. For some, chronic illness recovery encompasses a goal to regain full physical health. For others, their illness may be a lifelong journey—coping with chronic illness may be the focus of their healthcare. Wherever they fall on this “scale”, most people living with chronic illness find themselves on some sort of path to recovery—be it mental, physical, and/or emotional.
Throughout the process of healing from a long-term illness, you’ll inevitably go through different emotional phases as you come to terms with your illness—one of which may be an obsession with “returning to normal”. For me, this phase played a large role in my process of coping with chronic illness. It evolved out of a determination to get healthy, but inevitably lead me to avoid confronting and accepting my situation.
In the following paragraphs, I will attempt to articulate some of the many emotions and mindsets related to recovering from chronic illness. My perspective is specifically geared towards Lyme disease recovery, but I predict some points may resonate with those living with other forms of chronic illness. If you are grappling with your own relationship with recovery, I hope my insight provides you with some clarity and inspiration…
One Track Mind: Recovery, Recovery, Recovery
Through my attempts at Lyme disease recovery, I developed an interesting relationship with the idea of getting healthy. As someone who liked to have control and find actionable solutions to problems in my life, I was bound and determined to get better. Initially, I embodied an ambitious, one-track-mind mentality that revolved around recovering from my illness. Recovery and reaching a state of “full health” was my number one goal. Consistent progress towards beating my Lyme disease infection was all I cared about.
All my attention was geared towards treating my Lyme disease. I viewed my illness as the one obstacle preventing me from “living my life”. As I saw it, my life and plans were put on pause until I was healthy again. I entered Lyme disease treatment with the mindset that for life to be good, I needed to be better. I needed to be fully healthy.
The concept of coping with chronic illness was lost on me—I did not want to cope with my situation. I only wanted to improve it. Therein lied the problem: my desperation to be healthy caused me to overlook the importance of coping with my illness. I avoided accepting my situation in fear of confronting its limitations. Instead, I become hyper-focused on getting better. I put a deadline on my recovery—until I met it, I did not believe I could be truly fulfilled.
This next statement may be obvious; this mindset was not just counterproductive, it was detrimental. First off, I was so set on getting healthy that I failed to acknowledge the “ups and downs” of progress. I saw any setbacks or flare-ups as automatic failures rather than “part of the process”. I also felt rushed and pressured to get back to my “normal” life. Therefore, the present days of being sick were seen as useless moments. I found it difficult to find joy and gratitude in those moments because I was always comparing them to what life “could have been” if I weren’t sick. Rather than trying to find fulfillment in my situation, I fixated on the “what ifs”.
A Change In Perspective: Healing is Not a Finite Goal
Anyone living with chronic illness would probably agree that, when it comes to treatment, progress is not linear and setbacks are inevitable.
This idea really hit home when I had my first severe flare-up. After a year and a half of treatment, I experienced a significantly bad, six-month-long flare-up after suffering from prolonged toxic mold exposure. Up until the mold incident, I had made promising progress in my Lyme treatment. I found this incredibly exciting, for my treatment was going to plan and I saw myself stepping that much closer to the finish line.
Yet all too easily I was set back leaps and bounds by a major flare-up. This flare-up was devastating. I felt myself take steps back to square one. After grappling with—and eventually accepting—the regression in my health, I realized I would have to change my perspective on recovery.
Up until then, I saw recovery as this finite end goal—that once I achieved my goal of recovery from Lyme disease, I would never have to look back. That the Lyme chapter in my life would come to an end and I could close the book of chronic illness for good. After the flare-up, however, I realized I had to accept the possibility that—even if I did make a full recovery and felt “back too good”—there would always be a chance of a relapse. That even if my treatment was taking great strides in the right direction, I would still have flare-ups and periods of difficulty.
This was a hard pill to swallow. Yet this realization was crucial for me to form a healthy and productive mindset around healing.
Living with chronic illness entails so much more than treatment and physical improvement. It is more than just an end goal. Sure, anyone with a chronic illness wants to “get better”. Yet, ultimately one of the biggest emotional hurdles to jump over is learning how to find fulfillment in your life, even if your circumstances are anything but ideal. My hyper fixation on recovery prevented me from fully confronting and accepting my illness, which in turn limited my potential for satisfaction and fulfillment.
Accepting the Longevity of Your Illness: Healing is a Lifelong Journey
I realized that my chronic illness would be a lifelong journey—that, to some extent, my life would always be impacted by my experience with chronic Lyme disease. Even if I make a full recovery and never have to deal with an active Lyme infection or Lyme-related symptom again, my life is forever changed by my health. Simply living with a chronic illness has completely changed my view on health, and therefore my health—good or bad—will always be at the center of my life.
Once I was able to accept the longevity of my chronic illness and let go of the concept of a finite end goal, I was able to approach my situation with a much healthier and optimistic mindset. Relieving myself of this pressure to “get back to normal” and stay that way allowed me to find so much more fulfillment and appreciation in my life. Even on the bad days, it was easier to find gratitude. Ever since, I’ve been better able to find silver linings.