Posted by Sami Kennedy on December 10, 2013
In honor of IBD Awareness Week, which wrapped up on Saturday, I thought I'd come back from my blogging hiatus and talk about what it means to be an advocate.
Over Thanksgiving break, I had a revealing conversation with my mom about my life in high school with ulcerative colitis. Her memories of how I coped with UC are not always how I remember myself coping. There were things that I heard from her perspective for the first time, and some of them were hard for me to revisit. I was reminded that I was once a vulnerable high-schooler - and while this is/was true for all of us, it was nevertheless hard for me to be faced with things from my past that I had unknowingly blocked for years. I remember how much I once idolized many of the 'popular' IBD bloggers. I didn't really begin regularly reading IBD blogs until my senior year of high school, but once I did, they had a strong influence on me. One blogger ran a few opportunities for her readers to submit to group projects, and I emailed her a submission once. I remember just glowing when she responded. Of course, I realize now that she's just a normal young woman like me with IBD, but she was a celebrity to me then. It was around this time that I first started to imagine that just maybe I would one day be like her. That I could be an advocate, too.
That idea was fleeting, though. All of 'my bloggers' were writing from the battle lines – living with aggressive Crohn's or UC. As for me, despite a rough time early on and a small flare that year, it was smooth sailing since then. (Read my story here.) An advocate was someone with a heart-wrenching story, who understood IBD vocabulary inside-out and upside-down, because they had experienced it, well…chronically. Who was I to imagine myself as an advocate?
At the ImproveCareNow Learning Session in October, a mom stopped me and Jennie David in the hallway to thank us for our posts. She said her pre-teen daughter, who has Crohn's, reads LOOP and wants to be one of us when she grows up. It was another moment in which I found myself glowing with pride, but as I walked away, I suddenly felt weak and out-of-place. It brought out a guilty feeling I've harbored since I began my work with ImproveCareNow. A sister to survivor's guilt - I'll call it 'remission guilt.'
'Remission guilt' is the guilt of knowing that I am living very well when others - with my same disease and who are equally adherent and health-conscious - are very sick. I had a particularly hard time shaking 'remission guilt' when I was selected as a patient scholar for ImproveCareNow. Who was I, a healthy college student with absolutely no limitations because of her disease, to represent thousands of much sicker kids with IBD? At the first Learning Session, it was Jennie who helped me shake off this guilt. She assured me that our passion mattered, not our histories, and the growth of our friendship despite our differences has reinforced this for me.
Recently, though, as nearly all of my friends with IBD flare while I remain as healthy as ever, I've been struggling again with 'remission-guilt.' It's part of the reason you haven't read much from me recently (along with heaps of schoolwork and other PAC responsibilities). I have a tendency to doubt myself, to ask myself whether I think too much of myself. After that conversation with the mom in the hotel hallway, a part of me froze up. Who am I, I've asked myself numerous times this semester, to act like I can understand what my friend is going through when it's been over four years since my last bad flare? Who am I to claim to be an IBD advocate when I probably can't even remember what the pain feels like?
And most of all, worst of all, there's the ultimate question that every other question boils down to: Why isn't it me who is suffering?
I start to feel unworthy. A little voice in my head whispers to me that I don't deserve to be an advocate. I should graciously accept my health and move on with my practically-normal life - but of course I can't do that. It's what I mean when I say that I sometimes feel like I'm neither healthy nor sick, but in a boat between two islands. There are days I can't relate to
some of my more carefree friends at college, but honestly there are days when I can't relate to my friends with IBD either. I hope you enjoy this rough sketch of my predicament (it's a wonder I'm not in art school).
So here's to the end of the semester, another year filled with health, continued hope for health for my friends, and a goodbye to 'remission guilt.' Whoever you are reading this - whether you have or don't have IBD, whether you are in remission or a flare, whether you have the most devastating or the simplest of stories - you are an advocate if you want to be an advocate. It is a choice and not a badge you earn through a certain type of suffering. IBD Awareness Week is technically over - but we need 51 more weeks of awareness and advocacy. We can ALL be part of that.
Over Thanksgiving, when I sat down with my mom and talked about my early days with IBD, I remembered the bloggers who I looked up to with such reverence and it occurred to me that perhaps I was defining advocate all wrong. I didn't look up to 'my bloggers' because they had heart-wrenching stories. In fact, in hindsight, what an insult it is to define someone by the course of their illness. I looked up to them because of how they lived with what they had; their confidence, their fearlessness, and their willingness to open up and display their most vulnerable selves for anyone to read. It didn't matter that their stories were different than mine. It's been a slow process to realize this, but they were advocates and I admired them because of who they were, not what they had or had been through.