-Poet Elizabeth Thomas
We Are Living In A Time of Great Empathy
Understanding leads to Empathy
There is hardly an IBD patient out there that hasn’t struggled with being misunderstood. We’ve all tried to explain what our diseases, and lives, are like, only to be met with some combination of disgust, pity, or aversion. Or maybe it was a well-intentioned effort at support, a suggestion to drink more tumeric tea, or a misaligned attempt to relate, with the story of that one time they ate a bad meal.
As we work towards a greater understanding of the real, complex, and often changing lives we live with IBD, we also work towards more empathy. After all, the more others understand, the more they can support us in the right ways, fight on our side, and empathetically just be present when there’s nothing else to say.
A Year Ago, When Our World Changed
This week, our social media feeds are full of reflections of our world a year ago, not just how much has changed, but how much we’ve all learned, how much we’ve grown.
Comments of how silly we were to be outraged at the thought of schools closing down for 2 – 4 weeks (I mean, can you even imagine?) and how stores’ checkout lines were just cart after cart of toilet paper. (why didn’t we stock up on anything else?) There are memes of Corona beers, reminding us how we collectively struggled with how much to laugh, and how much to be scared.
March 1st 2020 vs March 1st 2021 pic.twitter.com/CPzalHWuRm
— Meghan Hug (@meghanhug) March 1, 2021
But two weeks turned to two months, then to all of summer, into the holidays, and now, a full calendar year. And as we have struggled, we have grown. For many people, this may be the most significant and impactful challenge they’ve ever lived through.
For chronic illness patients such as ourselves, we can find so many parallels.
But this struggle and growth has instilled empathy in so many people, and for once, the comparison to life with IBD isn’t that one-time bout of diarrhea. It’s the complex, often scary, and ever-changing long haul. We are living in a time of great empathy, for patients and non-patients alike. And we hope it’s a piece of this that lasts.
Parallels from IBD to the Pandemic
Shit is real
It takes a while for us as patients to really come to terms with the lifetime nature of Ulcerative Colitis and Crohn’s Disease. Partly because it’s uprooting our typical ‘sick’ framework (get sick, go to the doctor, take pills, get better, get back to life as you knew it). Partly because I think a little bit of ourselves always wants to feel invincible. That overcoming is simple if you just try hard enough and want it bad enough, right? We’re stronger than this. We can control this.
I think the part that was scariest for many members of the general public wasn’t getting sick – it was coming to terms that there’s something out there we can’t control. We can do our best to manage the factors that we know, but it can still get through. (side note, not wearing your mask because it’s admitting that it’s real is as effective as thinking avoiding your prostate exam means avoiding cancer).
While chronic illness patients have had our own slew of complications – as disease doesn’t go away just because there’s another health crisis – we did witness our community make an effective transition to pandemic life, probably because we’ve already gone through that significant stage of acceptance. Of coming to terms with the fact that disease is real, that health threats are real. That there are things out there that we can’t control, even with the best of intentions and very positive thinking. In many ways, we were able to accelerate emotionally through the early stages of the pandemic. Yes, this shit is real, and now we’ve all experienced what it’s like to face that.
There’s always a lot of unknown
Thinking back to what we knew a year ago, we believed we simply had to flatten the curve. That once it peaked, it would start to go down, and we’d be happily on our way back to safety and normalcy. Hah. Then maybe we thought we’d hunker down until the end of spring, when many state lockdowns originally mandated. Nope. Then finally, we said good riddance to 2020 at our household new years eve parties, but by then, we knew the turn of the calendar wouldn’t magically fix anything, as much as we’d want to throw it out with the past year.
The chronic illness journey is very similar to this – we often face diagnosis with our naive framework of ‘sick’. Here’s the thing, take the pills, 10 days later, everything is better. So maybe we start our medication and even though we’ve been told this diagnosis is ‘chronic’, we can’t quite wrap our heads around the end not being in sight. Maybe that first med doesn’t work and we have to try something else, and maybe instead of the convenience of an oral pill, it’s an infusion with a nurse. We see others that have achieved remission and ponder why treatments work for some patients but not others.
We don’t even always recognize this until we’re deep into it, but there’s a process to coming to terms with a finish line that is so far out, or even nonexistent.
Remember what it felt like to come to terms with a health crisis with no foreseeable end. To keep up as research and recommendations change rapidly, and what it felt like to hold on when you didn’t know how much you had left, and you didn’t know how long you’d have to hold on for. This is what chronic illness patients live with every single day.
It’s an invisible enemy
We’re all familiar with the term ‘invisible illness’ – it can refer to any condition where the effects are great, but the outward facing signs aren’t there. It’s scary, when living with an invisible illness such as Crohn’s or colitis, to often feel like we don’t always know what we’re fighting against. When is it going to rear its ugly head, how will we feel? Will we be equipped to respond, or will we get knocked down for a bit? There is a lot of unknown when living with our diseases. Even though research is making amazing progress, many of us still work to get through one day at a time, fighting this invisible enemy.
It’s incredibly scary to feel like you’re fighting something you can’t see, whether it’s the disease inside your body, or the looming risk outside your door. It’s sometimes hard to justify that your efforts are necessary when there isn’t a clear visible tie back to improved health or reduced risk. It’s not putting a cast on a broken bone, and being fine in 4 weeks. It feels like a monster in the closet, but there are no lights to expose it and lock it away.
This is what life is like with chronic illness. We can’t see it, you can’t see it, and we have to keep fighting, even when it feels in vain. It’s that scary, invisible monster that we all just want to go away, and give us our lives back.
But we learn as we go
For every pandemic article reminding us how stressful things are, there’s one discussing some of the silver linings. Growth comes in the hard times, the times where we don’t know how to manage, but then we find a way – even if it’s way outside our original plan. Around here, we call this ‘earning our wisdom’ and it’s certainly not given away through the easy times.
The pandemic holds similar lessons to those of chronic illness.
We’re stronger than we thought we were, and we realize strength doesn’t look like an Olympic athlete. It looks like the person who is holding on and taking it one day at a time. Who is job searching while managing virtual school, who is finding ways to relieve stress when you can’t just go meet up with your girlfriends. Strength shows itself in the hardest times, not the easiest.
We’ve learned to adjust. Our plans didn’t go as expected. Our routines were disrupted. We were forced to find another way, and for the most part, we did. While it doesn’t mean we want it to stay this way (no to homeschooling. yes to not having to wear work pants), we can all find a little bit of pride in the way we pivoted, even if it was only a little.
We appreciate things and we want them back. It’s priorities and gratefulness. It’s all the things you think about when you can’t have them or do them (and maybe recognizing some of the things you can get rid of too).
For chronic illness, it’s a body without pain and unpredictability. One we can control. It’s not having to spend our energy managing symptoms, side effects, schedules, and insurance appeals. During pandemic, it’s going to restaurants and bars, concerts and 5K runs, vacations. For all of us, it’s loved ones and hugs and just being together. When our world transitions back, let’s all hold onto that great sense of appreciation.
We have a lot of toilet paper
I mean, we already had this on hand. And hand sanitizer, and soap, and even face masks. Oh, and social distancing? We’ve been doing that for years, out of choice to avoid germs, or because we just can’t manage to be social.
Mental health is part of this
Americans have sought out mental help support at record levels in the past year. From traditional clinics, to college campus resource centers, to online tools such as BetterHelp and Talkspace, many of us prioritized mental health like never before (and totally exposed the need for better systems and support for us all, nationwide).
Part of this was recognizing that mental health is so integrated into our whole experience, and it’s certainly more than extreme trauma or a mental illness diagnosis. Maybe the pandemic brought to the surface many of the things you’d been dealing with. Or disrupted the busy schedule many of us maintain, allowing us to ignore some of those demons.
Maybe you didn’t expect the effects of a pandemic to hit you so profoundly – after all, it’s out there and you’re in here, and the COVID-19 is a physical illness.
This is so similar to our experiences with IBD. It’s a physical disease that undoubtedly has mental health effects for pretty much all of us. Entwined in the experience is isolation and loneliness, and with that, self-worth. It’s dealing with actual trauma, even if that trauma doesn’t come from war or violence, but it comes with the quality of life and stability of health being totally uprooted, taken away, and being forced to adjust to a new normal. It’s anxiety and depression and being the sick kid in your class.
Many IBD patients themselves are still coming to terms with the fact that mental health is such a factor in this physical disease journey. The more we all recognize it, the more we all make space for treating it, the better outcomes we are all offered.
We won’t ever be quite the same.
And in some ways, that’s okay. We’ve all grown, learned, and reprioritized. We did, and still are, finding a way.
And hopefully, all of us have embodied a little more empathy. Empathy that involves patience, understanding, and listening. Acknowledging that things like IBD can be really hard and really scary, and that there is literally no end in sight.
Empathy that the need for each other, for strong support systems and people that ‘get it’ is critical. That a warm summer night on a patio, with a bottle of wine isn’t frivolous, it’s a little moment, that’s actually a big moment, that can help fill our souls, no matter what we’re facing.
We are living in a time of great empathy. Let’s use that to be intentional about understanding others’ hurdles, no matter how similar, no matter how different. Let’s never let that go.