Everyone always talks about being sick.
My life took an unexpected turn after I was diagnosed with inflammatory bowel disease (IBD). I was lost, trying to navigate the nature of this new disease, this new identity, in a new college where no one seemed to understand. So, when I found a community of patients, I finally felt like I had others fighting alongside me—I found direction.
Finding my place within the community changed my whole world. It felt as if a weight was lifted off me, not having to explain the nuances of life with a chronic illness. My community believed me, they knew my journey because they were on the same one. It was a safe and supportive space to talk about all the challenges and complexities of IBD. We talked about everything—but everything revolved around being sick.
Remission is the goal, isn’t it?
Short of finding an actual cure, remission is likely the goal for every patient. When I found myself spending my focus and energy on my life goals, and not disease management, I felt like I was there. We talk a lot about the sick patient experience—which is such an important topic—but it is also important to talk about remission. Yet, it is often left out of the narrative on chronic disease. When I found a treatment that worked, I unexpectedly lost myself in remission.
Survivor’s Guilt = Remission Guilt
I had tried every approved treatment on the market at the time, before I found one that worked. After having so many of them fail me, the first emotion that hit me was that remission is real. I spent months waiting for the other shoe to drop. I told myself not to get used to being healthy because it certainly would not last. It was a surreal and unexpected thing, to deal with negative emotions in an otherwise positive experience.
I finally did accept that my treatment was working, and that I could let go of many of the burdens of the disease. But I had some other unexpected emotions—how would I re-find my identity after living with the trauma of disease for so long? Why didn’t things just go back to pre-diagnosis? Was I the only one that felt this way? Why didn’t anyone talk about this?
The period of adjustment to remission is real. I learned to find my identity as someone in remission, while finding a way to connect authentically and respectfully with the same IBD community that had carried me for so long. Finally, I was happy and healthy.
That’s when another unexpected emotion hit—guilt. Survivor’s guilt. Remission guilt.
I went from a place where I remembered pain and struggle, to a place where disease management was frankly, easy. Now, I take one maintenance medication, I don’t have a lot of side effects, and my symptoms are virtually gone. This is what I want to share with those who are still struggling. I want us to all find relief and be able to rest together. I constantly struggle with feeling like I don’t deserve this and I know others do too.
Perhaps this is why we don’t talk about it. Maybe it’s the labyrinth and weight of unspoken guilt.
If You’re My Physician, Know This.
This stage shouldn’t be left out of the conversation while recognizing that remission is still not a cure. IBD doesn’t stop getting treated once we’re stable, and likewise, we’ll have needs related to our mental health and sense of identity. As a physician, you can’t look at this as the finish line. But it’s okay to talk about it with patients. It’s important for physicians to stay active in our whole-person treatment because remission is a good thing—and it’s better if it lasts.
This isn’t the end of my story. Remission is just a rest stop, and I still think constantly about disease decisions. I always have future treatment considerations in the back of my mind and the numerous ways they might affect me. But even in the present, I’m figuring out how to facilitate the remission conversation better so everyone can understand the whole story.
Experts by Experience is a collaboration between Inspire and Mayo Clinic Connect, online support communities for patients and caregivers. By sharing their stories, patients and caregivers awaken, inform, and strengthen the capacity to partner in their care. The stories also help clinicians and non-medical professionals in health care implement patient-informed practices in their interactions and communications, by uncovering opportunities for quality improvement. The series showcases the value of shared experiences and features contributors from around the globe.
About the author: Megan Starshak is from Milwaukee, WI. She works to empower other patients through her platform, The Great Bowel Movement, so that patients can find their voice and contribute to greater awareness. Megan works full time in marketing, loves being active, discovering new restaurants, and spending time with her dog. You can find her on Twitter at @ItsMeMegaroo.