The most powerful thing about being part of a disease community is the camaraderie. Whether you’re newly diagnosed or a veteran patient, there is always someone who has gone through what you’re facing and is willing to share their story. We are bound by our similar journeys, the perpetual ups and downs, and our desires to be healthy again.
When I was in the dark depths of living with ulcerative colitis (UC), some of my strongest resources were the friends I met in this community; they held my hand when I needed it, they gave me advice, and they cried with me when things kept getting worse. And when they got sick again, I did the same for them. This is the core of a lot of these types of friendships; the need for support and the offering of support is cyclical.
Until it isn’t.
I spent the better part of three years quickly getting sicker until, slowly, hospital visits became less of a regular occurrence and doctors’ visits became few and far between. It took a long time, but I returned to a “normal” life when I started working again, hanging out with friends in real life (rather than just communicating digitally), and just living happily overall.
I felt like I had achieved the ultimate goal: I got my life back. But that doesn't happen for everyone, and I’d even argue that most people don’t bounce back as successfully as I did. This is where some of my friendships rooted in UC began to suffer.
What is 'thriver's guilt?'
Over time, as I got better, I watched most of my friends continue to struggle, many with long periods of remission, but they’d ultimately fall back into serious flares. It’s so hard to watch people you love suffer, especially when you know exactly what they’re going through. I know how long a week in the hospital can feel, and I know how exhausting an inflammatory bowel disease (IBD) flare can be. And I know especially well how devastating unexpected surgery is.
This hit me particularly hard when one of my friends from Camp Oasis, a camp for children living with IBD, passed away due to her complications with Crohn’s disease. It’s been seven years since we lost our friend, and we’ve lost a few others since then, and I continue to wonder why I’m thriving when others are not. It’s turned into a bad case of “thriver’s guilt.”
Much like with survivor’s guilt, I regularly question why I lead a relatively unaffected life these days, but the difference with thriver’s guilt is that I continue to watch my friends’ health wax and wane, hoping that each of them gets to a place of stability like I have.
Thriver’s guilt is a complicated emotion because it’s a guilt that goes directly against all your personal goals. I wanted so badly to be healthy and to be able to live my life happily, but once I achieved that goal, it felt like I’d left my friends in the dust. I no longer call them for support late at night when I’m stuck in the bathroom, or ask them to keep me virtual company when I’m admitted to the hospital, and they don’t call me for that anymore either.
When I talk about the current successes in my life or my physical capabilities, I feel insensitive and braggadocious, and I’m sure they feel a sense of resentment or annoyance. I remember hearing about people who had mild cases of UC when I was very sick, and I was so jealous of their experiences. It’s like our worlds were eons apart.
And that’s a little bit how it feels now, although I’m at the other end of the spectrum. While I know my friends share in my gratitude about where I am with UC right now, I can’t help but wonder how many people no longer want to hear my story of triumph. I can’t say that I blame them.
Advocating from a place of health
I’ve tried to take my success in health and use it for the greater good; I started Girls With Guts, and I continue to travel to advocate for UC and other chronic health issues. I try to work directly with and for patients to help improve their experiences.
Nonetheless, I can’t help but wonder if, in my current healthier state, I still have a voice in this community. And if so, does anyone want to hear it?
I often feel disconnected from my community and my friends who remain so sick. I would be lying if I said my friendships haven’t suffered in the last few years because those who I used to be very close with don’t reach out as often or talk about how sick they are with me. We’ve lost the root of this type of friendship. We no longer equally need each other, and because patients with chronic illness constantly fear being a burden, I’ve found myself a bit on the outside of the community I once needed for support.
It’s difficult to write about something like this, as I fear some might think I’m seeking pity for being healthy — but really I’m still just trying to find my place in a community that I put so much of my life into. We all dream of getting our health back, but I don’t think many of us think about how our journey will change once we do.
I know there will always be an open spot for me in the UC community if my health ever tanks again, but until that time, I’ll stand on the outside looking in, doing the very best I can, and cheering on all of my friends no matter what.