A blog about my experience with chronic illness and finding hope in the darkest days

Tag: writing

“Hanging in There”

“How are you?”

The dreaded question. The lethal question. The loaded emotional landmine that’s constantly strewn about. It’s asked at the grocery store, at your therapist’s office, when you bump into an old friend in the middle of a busy parking lot. Sometimes, it’s a question we’re ready for. We’ve come up with some clever, creative way to deflect what’s really going on inside, or we brace it like an aggressive bust of wind, brave and unnerved. Sometimes, we’re not so ready. It catches us off guard, sends daggers into fresh wounds, and adds another layer of confusion to our frayed, dismantled lives. “How are you” is a question with various layers, used in various situations, for various different reasons. If you’ve ever found yourself hating this question, then this post is for you.

I’ve been asked this question a lot this past year. Often from people who knew I was in the middle of a grueling, tedious diagnosis journey, but also from people who were completely unaware of the unnamed, internal battle that completely uprooted my life. I grew to loathe this question and dread those three words because I never knew the right way to respond. The people-pleaser in me was too scared to be frank about how absolutely not-fine I was, and then there were other variables such as who was asking, where we were, how much time we had to talk; I wasn’t going to unload my emotional baggage in the middle of the grocery store to a mom of an old classmate I hadn’t seen since elementary school. She had frozen peas in her cart. I had a racing heart rate and limited ability to stand. That was not the time to unpack the unraveling of my old life. That was not the time to be honest. 

A lot of times, I lied about how I was doing out of the sole purpose of convenience. It’s easier to stay on the surface of feelings when time is running short, when schedules are packed and rigid, and diving down to the depths of our darkness is an activity we don’t have time for. Other times, I lied to avoid derailing the conversation, or making friends uneasy about how upset I really was. Many people don’t know what to say when the response to “How are you?” is anything less than “fine,” and I wanted to prevent the lengthy awkward pauses, the stammering and searching for words that come when people grow uncomfortable. I was tired of my reality making people uncomfortable. So at some point, I locked the truth away. I stuffed it into the bottom of a drawer like a ratty old t-shirt, unfit to wear in public. 

Sometimes I did try to be honest. I tried to tell my friends and family how hard it was to be at home, debilitated and overwhelmbed by an illness that at this point, was still unnamed. I tried to tell them how envious I was of other people who were still at school, living the life I wanted, and how difficult it was to watch the world go on without me. Sometimes my candor would open up the conversation, allowing a deeper connection to take place between us. But many times, especially with young people, I found they would freeze up, starkly unequipped to deal with these kinds of heavy conversations. My young college friends offered support and encouragement in the ways they knew how, and while their kindness and compassion deeply touched me, they usually didn’t have the life experience to fully understand and many of them felt pressure to know the exact, right things to say. 

I wish I would’ve told them that I never needed a perfect, comforting response. I wish I would’ve told them that it wasn’t advice or encouraging pinterest quotes I was looking for, but someone who would show up, who would weather the storms with me and speak honestly about what they couldn’t understand. I didn’t need my friend to be my therapist, I already had one of those and a great one, in fact. I didn’t need to be told “everything happens for a reason”, and I also didn’t need constant reassurance that everything was going to be okay. Somehow, I had quiet hope that everything would eventually work out (emphasis on eventually…), it was just buried underneath mountains of grief and hurt and anger and exhaustion. I didn’t need someone to fix my problems (though that would’ve been nice…), I just needed a friend to help me ride the waves.

Somewhere along the path of constant “How are you?” and “How have you been?” questions, I started to cling to the response of “hanging in there.” To me, it was like a neutral, meet-in-the-middle kind of answer; an optimistic reply that would assure my friends I wasn’t falling into a massive, black pit of despair. It wouldn’t cause the blunt discomfort the response, “absolutely, utterly terrible” would create, and it was also kind of halfway true, so it wouldn’t be considered a flat-out lie. And so it became my go-to. I used it at the grocery store, I used it on texts from friends at college, and I used it on distant family members, careful not to cause any unnecessary worry about my progressively worsening, undiagnosed medical condition. It was safe, it was easy, but it was actually still a lie. Looking back, I despise those three words now. I wasn’t “hanging in there,” I was hanging by a thread, and hardly, at that.

Picture of an old conversation via text, showcasing one of my classic “hanging in there” responses.

While I understand my motives and am aware of the sometimes necessary convenience of the typical “fine” response, I regret not being more honest when people asked me “How are you?” I used “hanging in there” like it was a synonym for “barely holding on.” I clung to the phrase like it was a state of being I could reach, if I just said it often enough. But “hanging in there” is not for when an illness uproots and derails your life. “Hanging in there” is for twiddling your thumbs as your dinner heats up, or waiting a week and a half for your online shopping order to be delivered. As much as I tried to deny it, “hanging in there” was a lie, and one I still regret to this day.

So how am I now? I’m a bit of a mix between restless and hopeful. Somewhere in between frustrated and okay. I jump between these like a ping pong ball, never quite landing in one, but not getting stuck in one either. I still haven’t mastered the loaded “How are you?” question, and I often find myself jumping to the “I’m good!” response a little too soon. But I’m learning. I’m making room for not being okay, and letting go of expectations of what that’s “supposed” to look like.

And what about you? Are you “fine?” Are you “hanging in there?” Or are you absolutely positively terrible, taking your days breath by breath and hour by hour? We’re living in unprecedented times, and that can bring unprecedented feelings. But I urge you to invite it all in, to reject the convenient, comfortable answers. I urge you to have those hard, heavy, honest conversations because frankly, now we’ve got nothin’ but time.

A Little Thing Called Hope…

Is this thing on? Kidding, although considering how technologically challenged I am, it’s a miracle I was able to turn my computer on, let alone create this blog. I never imagined myself ever creating a blog, but hey, it’s 2020, I’ve got a few things to say, and frankly, I ought to get with the times. So, here I am. 

First and foremost, hi. Welcome. I’m so glad you’re here. Whether you have any experience with chronic illness, or if you’re an extended family member I’ve bribed to visit this page (hi Aunt Nancy, coffee’s on me this time…), I hope you can find something in these posts that resonates with you and makes you feel seen. A few weeks ago, I stumbled across a quote that shifted my perspective on the isolation suffering can bring. It said, “All the things that make us feel alone connect us.” I like the sound of that, and I also like the thought that this blog could be that kind of connector. That it could encourage us to use our stories of pain and hardship to bring us together, uncovering the powerful, resilient nature of the human spirit that lives inside each and every one of us.  

It was a little over a year ago when a chronic health condition took over my entire life. Over the course of a few months, I went from being a self-sufficient, independent college student to having a hard time showering or preparing a meal for myself. It was a lot to process – too much to process, really – so, I started writing. At the time, writing was out of necessity, a means of survival; something to keep my shattered spirit alive. And while it certainly has kept my battered heart beating, writing has also filled my days with infinite light, immense gratitude, and deep, true joy. Putting pen to paper has saved me again and again throughout my health journey, and I’ve been holding onto that buoy ever since. 

Over the past few weeks however, I’ve begun to wonder if my writing could be more than just a personal pastime. I wondered if I could use my words to raise awareness about a disease that affects more than 3 million people nationwide, yet is unfamiliar to a frightening portion of the medical world, and even more unknown to the general population. I thought maybe if I could tell my story about being a young person faced with illness, it would make other people faced with illness (young or not so young) feel a little less alone in their shocking “new normal”. And then I pondered, what if I shared what I’ve learned about living the unlivable, about putting one weary foot in front of the other even when I was fresh out of reasons why, and what if doing so actually helped someone? Encouraged them to keep truckin’ through their own unimaginable? If my writing does any one of these things, then this blog will have served its purpose.

I plan to speak about my own health journey through this site, but I would like to preface that with one thing: while my journey certainly embodies a lengthy experience with a chronic, debilitating health condition, from the very beginning, it has always been larger than that. Sure, it is a tale bred from doctor’s appointments, ER visits, referrals, and at long last, a diagnosis. But from the minute my illness made itself known, I unknowingly embarked on a journey of faith, a discovery of strength, and a quest for joy in the darkest days of my life. This story of mine is not solely a story about illness, it is also a story about hope. 

On my darkest days, hope shined inside of me like a flashlight, piercing through the blackest of nights and illuminating the way forward. On the toughest mornings, hope pulled me off the bathroom floor, pushed back my shoulders and straightened up my spine, convincing me to keep forging ahead. Hope was there, always, somehow, even when it felt like my illness took everything from me. No matter how great the storm or how extensive the wreckage, hope never left my side.

This past year has taught me a lot about hope. I’ve learned that it comes as a concentrate, that you only need a little, and a little is enough. I’ve learned that it’s indestructible, that it can weather the hardest of angers, the fiercest of resentments, and that hope is stronger still. Perhaps that is the most important thing I’ve learned, how strong hope truly is. It is stronger than pain, stronger than fear, so strong in fact, it is unbreakable.

That hope lives inside all of us, but it belongs to those who tap into it. The ones who look defeat in the eye, and instead, choose hope. 

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