No inflammation visible. Labs and biopsies clear. Looks like you’re in remission.
Like many patients, I waited a long time to hear words like that. Long enough that I wasn’t sure what remission would look like anymore. Would all of my symptoms be gone, somehow? Would I still be stressed over unpredictable flare-ups, or treatment failure? Would it mean fewer tests and procedures, less frequent medical appointments? Fewer phone calls between medical offices and insurance companies?
Some of that has been true. My follow-ups are now being scheduled in longer intervals. Most of my labs have been stable for a while now. Some of my symptoms have significantly improved, or they’re at least getting there.
But that’s not the whole story. New problems have cropped up just as others are calming down, uncovering issues adjacent or indirectly related to my IBD. Beyond that, my current treatments come with more intense side effects than I’ve had in the past, some more manageable than others. And the prior authorizations and eligibility assessments and appeals trudge on, as ever.
“Remission” has been a surprisingly emotional process. Intellectually, I’ve known for years that this is a chronic condition; but the emotional reality of that is setting in. My mindset is shifting from “we’ll fix this” to “we’ll manage this.” Emotions about my initial diagnosis, frozen by survival mode kicking in, are now resurfacing as well.
I don’t know how long this remission will last, or even what it will look like from one day to the next. After years of uncertainty, it’s a little daunting to realize this might be as close to “healthy” as I can get.
Another part of this process is becoming a new kind of patient. I have gotten used to advocating for myself - learning how to weigh treatment options, to research my condition, to ask the right questions. But in some ways, remission has been a completely new condition to grapple with. It has its own set of symptoms, whether they’re residual Crohn’s complications or side effects from my medications. Some of those symptoms are potentially treatable, but it’s a new trial-and-error process with no certain outcomes. (Plus, after years of researching and discussing IBD treatments almost exclusively, learning about completely different medications and approaches has been humbling, to say the least.)
As I described before, it requires a different emotional perspective, too. It’s one thing to advocate for yourself when everyone agrees, on some level, that you’re actively ill. It’s another entirely to ask for help when you “should” be doing fine. Whether it’s making sure I’m articulating the full impact of my lingering symptoms to my doctors, or explaining to family and friends why I still don’t feel or function “like normal,” it’s tougher to speak up.
But honestly, I'm fighting myself more than anyone. The people-pleaser in me just wants to say I’m fine, everything is fine.
Thankfully, I’ve been met with a lot of support through this process. But there’s always some fear that others won’t understand that “remission” can be more complex than it sounds. It’s not a simple narrative, but no one is going to know what’s going on unless I can talk about it.
As tricky as speaking up can be, I’ve also had some difficulty gauging how much to self-advocate. It’s a little harder to understand what I need now, or how my body is doing. Just as I had to re-learn my body when I got sick, I also have to listen for new signals from it now.
I have already found myself pushing a little too hard for answers that just needed time, or getting frustrated about problems that improved on their own. While that’s not always the case, I’m learning that I don’t have to fight every battle as strongly as I used to. Where patience could be dangerous in the past, it can actually be beneficial to me now.
All this to say, remission hasn’t been a good OR bad process for me. It’s just more complex than I ever imagined. There are still many incredible upsides, from my overall prognosis and to my daily quality of life. I’m indescribably grateful for the success of this treatment; for my body’s resilience; and for what remission means for my future, even if it’s not permanent. Simultaneously, I am learning and coping with a new stage of chronic illness, which can also be challenging.