When you type the words “chronic illness college” into google, you get 252,000,000 results in 0.58 seconds. The first title to pop up is “Guide For College Students Living with a Chronic Condition,” followed by “28 ‘Hacks’ for Going to College With Chronic Illness,” “12 Things I Wish I’d Known Before Going to College with a Chronic Illness,” and “Surviving college with a chronic illness.” I had planned to make that number 252,000,001 by writing something very similar until I tried reading a few and realized how irritating they are. To start, there’s the dramatic, anxiety-provoking titles and dumbed-down language that makes you think you, the person actually managing the disease (and doing a great job) are stupid. Then, there’s the fact that many of them are written by people who have no actual experience on the subject. And finally, the real source of my frustration is that most of these articles lie. A chronic illness is not a packing list, and it can’t be tackled by checking off boxes or pretending to be “normal.” Teaching people that it can be is wrong.

I know this post won’t be on the first page of google when someone like me types in “chronic illness college” and hits enter. I know they’ll instead be bombarded with the same numbered lists of “must haves” and “must knows” that make them feel like their entire existence is being reduced to a step by step problem. I know that they may choose to follow one of those lists because it seems like the logical thing to do. But if I’m going to spend the time changing that 250,000,000 to 250,000,001, I want my 1 to tell the truth: that there is no “guide” for going to college, or high school, or camp, or anywhere with a chronic illness, because there’s no guide for living in the first place.

So, instead of using my 1 to make a list, I wrote a letter. It’s addressed to the me-from-the-past that was swamped with college applications and wondering how I was supposed to handle having Crohn’s on top of all the regular college mess. And in a sense, it’s also addressed to everyone who’s been in her shoes, past, present, and future. But if that isn’t you, feel free to read it anyway. I know it won’t get as many views as the 250,000,000 links above it, but I’m glad that it’s out there, and I’m hopeful it will find the right people.


Dear past me,

Hi. It’s current me. I know future me will look at this one day and think that I’m a massive idiot, but she’s not around right now so it’s all good. You’re nervous. You’re tired. You’re so tired. So am I. It’s almost like we’re the same person!

But you know what past me? All that nervousness and all that tiredness doesn’t mean what you think it does. It doesn’t mean you’re taking the wrong path, and it doesn’t mean you’re going to fail. It doesn’t mean your expectations are too high and that you aren’t capable. I know you’re stressed about the future, and school, and where you’ll end up. You’re thinking about how you’re going to have to start all over with new people and new teachers and new systems and it all seems like so much, and you’re just tired and you don’t know how you’re going to find the energy to make it all happen.

There are so many extra meetings, and extra forms, and extra accommodations, and extra details to figure out just because you have this thing. This thing that takes up so much time and energy and attention. And it’s not fair, because most people don’t have to deal with any of it. But there are also extra clubs to join, and extra people to meet, and extra support to receive. There is extra appreciation to be had, and extra naps to take, and extra reasons to take care of you.

You’re right, past meβ€” college has plenty of things to be nervous about. You’re going to have bad days. You’re going to have hard weeks. You’re going to make mistakes and forget things. You’re going to have to make sure your fridge actually works so that your $17,000 medicine doesn’t get ruined :). You’re going to to have to remember when to take it and to save a day after for the side effects. You’re going to have to be careful with germs and try not to get sick. You’re going to have to explain things to people, and explain them again when they forget. You’re going to have to be okay with people not understanding. You’re going to have to be okay with sleeping more. You’re going to have to be okay with missing out. But guess what? You’ve done those things before, and you know that none of them last forever.

No, past me, I don’t know all the answers. I don’t know what the best heating pad or supplement powder or meditation app is. But I don’t need to know them because I know you. I trust you. I know that you can open up to people and still set boundaries. I know that you can be independent and still ask for help. I know that you can push through a bad day and still know your limits. I trust that you will take care of yourself, and I trust that you will surround yourself with people who will care about you too.

Yes, pas me I am nervous. Maybe even more than you are. But I’m excited nervous, because college is just a piece of regular life. And we’ve been doing just fine at that as it is.

Do something scary today

A few days ago, I made myself an appointment with a new doctor over the phone. It took all of 10 minutes and wasn’t even that hard. But if you told me last year that I would have done something like that, I wouldn’t have believed you. I know it sounds ridiculous. A phone call, really? Is that really such a big deal?

Yes. Yes really. Because to me, it is. I hate making phone calls. Absolutely despise. They are one of the most nerve racking tasks I could possibly be asked to do. The thought of talking to someone I’ve never met, especially when I can’t see their face terrifies me. And rather than face this fear, for much of my life, I got really good at avoiding it.

I had my parents make my appointments. I sent emails instead of calling. I “forgot” to leave a message. But as I’m sure you all know, avoiding only works for so long.

Eventually, I turned 18 and my parents couldn’t call my doctors anymore. A global pandemic made it impossible to meet with people face to face. My volunteer position at the hospital switched and I was now working behind a desk with a phone 3 inches away from me. 30 minutes into my first shift, it rang, and no one else was around.

That first phone call was a mess. I fumbled over my words and had no idea what the other line was talking about. But, taking the advice of my supervisor, I just pretended like I knew what I was doing and it all turned out okay. By the end of that day, I had answered 5 more calls and called the PACU 4 times myself. As the weeks went on and I built up my confidence in “pretending to know what I was talking about,” hearing the phone ring didn’t make me jump out of my skin anymore. The thought of scheduling my own appointments suddenly seemed a lot less daunting.

Now, if you think I’m being dramatic, you’re right; I am. I know this story sounds ridiculous. But the thing is, everyone has something they get dramatic over. Everyone has something that, for whatever reason, makes them want to run in the opposite direction and hide. It doesn’t mean there’s something wrong with you. It doesn’t mean you’re weak, or stupid, or a failure. We all have things that make us anxious, and a lot of time, that anxiety comes from the fact that we care. I care about helping people at the hospital. I care about having good relationships with my doctors. Phone calls stress me out because I care about the person on the other line.

It’s okay to have things that scare you. If you didn’t, that would honestly be a lot weirder. But don’t be like me and avoid doing things that make you nervous for years and years and years. Do them now.

Ever since that first “scary” phone call, I try to get myself to do one scary thing every day. I’m not talking about something extreme like cliff jumping or skydiving; scary doesn’t have to mean dangerous. I’m talking about the little things that I could easily avoid doing if I wanted to. The things that make me nervous in the moment, but are positive in the long run. Things like texting a friend who I haven’t talked to in a few weeks, or asking them for plans even though I know they might not be free. Things like telling someone when they make me upset, and telling someone “no” when I don’t have the energy to do what they’re asking of me. Things like sending my doctor a question I’ve had for a while and speaking up at my appointments. I know the idea of doing something scary every day sounds daunting, but when you break it down, it’s 100% doable. And by living this way, I’ve realized that a lot of the things I used to consider “scary” really aren’t so bad.

You don’t have to do something big, or bold, or crazy. Most scary things aren’t. Start small: make one phone call, send one text, submit one application. And if you can do that today, think of what you’ll be able to do tomorrow, and the next day, and the next day. Eventually, all those scary things will just be things.

Ask me

When I was 10, I made my mom buy me a shirt that said “ask me about my Crohn’s Disease” because my Camp Oasis counselor had one and I thought it was just the *coolest.* I really only wore it around the house and it sort of became a joke to the rest of my family. Every time I would come downstairs my dad would “ask me” about my Crohn’s to the point where I taped a piece of paper saying “actually don’t ask” to the front of it to make him be quiet. At the time, it was just a funny t-shirt that I wore to make my family laugh. But thinking back, 10 year old me was on to something important.

So often, we assume things about other people based on what we can see or gossip we’ve heard. We see someone who looks “healthy” and “normal” and assume that nothing could possibly be causing them pain. Or, we hear that someone has a certain condition and assume they are affected by it the same way our aunt, or lab partner, or favorite tv-character is.

But as someone living with an invisible illness, I can tell you that these assumptions often hurt more than my disease itself. They make me feel like people are looking at me through a glass case, as if there is something in the way preventing them from reaching out to me. They assume that if their friend or relative is doing well on a certain medication, I should totally try it to because it will fix all my problems- as if I’m not already trying my best to manage my disease. When I voice my offense, I’m met with the response “Their intentions were good! They just didn’t want to make you uncomfortable!” But in these scenarios, is it really my comfort they’re trying to protect, or is it their own?

Asking people to tell us about their battles is not easy. It feels “wrong,” like the very question is off-limits. But avoiding these types of questions because they feel funny isn’t okay, either, because it leads us to judge people rather than try and support them. And when we assume things about other people, we make them feel small; like their story is invalid if it doesn’t fit with how we picture it in our own heads.

I’m guilty of this. This “thinking we know people based on how they appear and what gossip I’ve heard about them” nonsense. I’m pretty sure we all are. People are so scared of being “uncomfortable” that we sacrifice others’ well-being for our own peace of mind. For so long, we’ve been taught to piece a person’s story together by making assumptions and snap judgments instead of just asking them to tell it themselves. But those assumptions and those judgments? They hurt.

Asking doesn’t.

There’s nothing wrong with asking someone how they’re feeling, or how their condition affects them, or how you can help them get through a rough day. Sure, there are polite and impolite ways to do so. Asking someone “what’s wrong with you?!” or is a lot different than asking “how is your ______ impacting you today and how can I help?” or “how is your treatment going?”

When we ask people questions instead of assuming the answers, we let them tell their story the way they want it to be heard. We show them that we value and genuinely want to learn how to support them. Of course, that doesn’t mean we can just ask whatever questions we want and expect an answer every time. If a person isn’t willing or able to respond to you, that’s okay. You did your part- you asked. You showed that you care and want to learn. That’s already 5000 times better than just assuming. Or, if they correct you and explain a more polite way to ask your question, be receptive. Don’t defend your mistake, but rather be willing to learn and improve the way you approach that situation next time. Asking the wrong way and learning from that mistake is better than not asking at all and just taking a guess.

I may not wear an “ask me about my Crohn’s disease shirt” anymore, but that doesn’t mean I don’t want to start conversations. If you don’t know what food I can eat, or what I mean when I say I don’t feel well, or how I expect you to react to that statement, ask me! Don’t ask your great uncle who also has Crohn’s and expect me to feel the same way as he does. Don’t google it and get confused when I don’t have the same experience as the robot on WebMD. Just ask me. It’s not rude; if anything, it’s the opposite. Asking people questions is compassionate. It’s thoughtful. It allows us to hear their perspective and put ourselves in their shoes. It may feel weird, but asking is the right thing to do. It’s the kind thing to do. So if you have a question, go ahead and ask. And when you get an answer, listen.

4 Words

I’m thinking about you.

Yes, you. The person reading this right now. I’m thinking about you.

I’m thinking about you, and I hope you’re doing well. But I know that might not be the case, especially now. You may be thinking “you don’t even know me” or “you have no idea how I feel,” and you would be right. Maybe I don’t know you. I can’t possibly know how you feel. But I’m still thinking about you.

I’m thinking about you, and I care about you. I’m serious. Pinky promise.

So why am I telling you this? To make you smile? I hope so. But it’s more than that. So often, I find myself writing about how to recognize when someone needs your support. How to put yourself in their shoes and try to imagine how they might be struggling. Empathy is one of those words I write about so much that sometimes I start to think it’s not even English anymore. If you’ve followed my blog for a while, you know that I’ve given you the “why.” I’ve told you my story. I’ve spent hours upon hours explaining why we, as people and as a society, need to do a better job of having empathy and support for each other. But the “why” is just context. On it’s own, the “why” is powerless. Who cares why we need empathy if we don’t know how to show it? That’s where the other half comes in. The “how.”

How can we effectively support one another? How can we show empathy in a real, tangible way that actually helps someone? We know we need to have conversations. But how do we start them? Who do we talk to? And what do we say first?

That’s where the 4 words come in.

“I’m thinking about you.”

I’m. Thinking. About. You. 4 words, 18 letters (if I counted right), and yet they have the power to do so much good.

I don’t know about you, but whenever I send or receive a text with those words, I smile. It makes me feel good. Sure, maybe it seems a little awkward to message someone you haven’t spoken to in weeks. And I know it’s uncomfortable sending that first text to someone after they’ve experienced a tragedy. But the anxiety and fear we associate with reaching out is so small compared to the difference those few words make to the person hearing them.

It could be that your message is the first text they’ve received all day and they finally have the chance to open up to someone. Or maybe they don’t have the energy to text you back, but seeing those words flash on their screen makes them smile and power through the next few hours. Those 4 words can be the difference between someone feeling like no one cares and like someone does. So be the person who cares. Be the person who doesn’t just know why empathy is important, but who actually uses it to make today better for someone.

Having empathy means stepping out of your world and into someone else’s. And it doesn’t have to be for a long time- they just have to know you’re there.

So I have a task for you. I need you to pick one person. Any person. Try to pick someone you haven’t talked to in a few days, or weeks, or months. And send them 4 words: I’m thinking about you. It can be a text, a card, a telegram, I don’t care. Just make sure they hear them.

We’re living in a really hard time right now. A time that has forced a lot of us to stay shut away in our own worlds, unsure of how to step into others’. But just because we can’t touch other people doesn’t mean we can’t think about them. So tell someone you’re thinking about them. Tell them that you want to know how they’re doing not just to be polite, but because you actually care. Send that text (or that card or that telegram) and step inside their world for a moment. I promise you’ll both feel better for it.

New Years Intentions

I’m just gonna say it: I hate new years resolutions. I think they’re the worst. And no, I’m not just bitter about my failed attempt to totally transform my life in 2014 (hey, I was only 11, give me a break!). But I don’t hate them for what they are- goals are good things. I hate them for the way they make us think.

New years resolutions perpetuate an all-or-nothing mentality that is as ridiculous as it is detrimental to our mental well-being. The idea that we have to do something perfectly or not at all causes us to believe that one mistake signifies instant failure. That if we can’t do it right all the time, there’s no point in trying in the first place.

Now, this mentality might work if you’re a superhuman robot who never has bad days and can afford the “perfect” lifestyle we see advertised so often in the media. But what happens when you wake up in excruciating arthritis pain at 4 am and can’t make it to the gym? Or you only have the energy to make a frozen pizza for dinner instead of spending hours in the kitchen. Or, oh, I don’t know, a global pandemic makes it so that you essentially can’t go places and see people for 10+ months. Does one skipped workout, or frozen meal, or bad day make you a failure? Of course not. But our little friends called new years resolutions seem to think they do. Which is why they suck.

We aren’t built to be all-or-nothing beings. We have good hours and bad hours within each day. We face challenges that tear us down but also bring a new perspective. We feel pain, and sadness, and fear, but at the same time, we can still sense the goodness that still exists in our world. Life isn’t black and white. It’s not all great or all awful. Rather, it’s a mix of both.

I hate feeling sick. I hate waking up feeling like I was run over by a truck and dumped into the ocean where I spent 2 hours treading water. I hate the physical, mental, and emotional toll that living with IBD takes on me. But I don’t hate my disease or the life that it has caused me to live. I don’t hate the sense of empathy I’ve gained, the people that I’ve been able to meet, and the impact that I’ve been able to have because of it. I cherish those things, and I can cherish them while still hating the way that I feel.

So how to we handle a time when everyone seems to be making huge “all-or-nothing” goals that we know will only hurt us in the end? How can we motivate ourselves to try new things and be open to change without feeling like a failure every time we slip up? As I mentioned before, it’s not the idea of making goals that harms us in the long run, but the way we think about them. So I present to you, my totally awesome way to set goals without feeling like a complete and utter failure when you make a mistake or two (or three or four or seven) along the way! Now say that 10 times fast.

Here’s how it works: stop making new years resolutions, and instead, start making intentions. See how much nicer that word even sounds? Intentions, by definition, are things you aim to do. Think about shooting a basketball. Sure, you have the size of the rim, the heigh of the hoop, how far back you’re standing, and if it’s really windy outside determining if your shot will go in. But those things are all out of your control. The one thing that is up to you is your aim. So in this new year, don’t worry about setting goals for things you can’t control. As we saw in 2020, stuff happens, and sometimes, there’s not much we can about it. So forget about resolutions, and focus on intentions. Focus on aiming for the things you can control.

In addition to that, make those intentions broad. Setting a goal to do a six step skincare routine three times a day is intimidating and likely not going to happen. So instead, make one of your intentions to prioritize self care. Decide to do one, or two, or three things just for yourself every day. Maybe most days that looks like doing your multistep skin care routine, and that’s great! But on the days where getting out of bed is hard, just brushing your teeth can count, too. And bam! You aren’t a failure, because you’ve followed your intentions to take care of yourself.

Now, let’s talk about what types of intentions to actually make. So often, we tend to focus on physical goals and completely forget to make mental ones. But the big actions, like working out and eating differently, are no more important that the ones you can’t see. Make an intention to shift your current attitude closer to your ideal mindset, whether that be becoming more inclusive, thoughtful, or self-aware. So make goals for the way you want to treat yourself, but also the way you view and talk to yourself and others.

And lastly, realize that you shouldn’t be perfect. Even by using intentions instead of resolutions, we’re bound to forget where we’re aiming sometimes, and that’s ok. Maybe a few weeks in you realize setting an intention to be more mindful is actually making you more anxious, so you decide to focus on something else. January you is not the same as February you or July you, and that’s to be expected. So remind yourself that the goals you set now are for the person you are now, and those goals may change as you do.

New years resolutions suck, and so often they make us feel like we do, too. So let’s stop giving them that power. Instead, take the hope, the ambition, and the motivation that once fueled your resolutions and turn it into something useful: an intention. Think of the person you want to be- the actions you want to take, the thoughts you want to have, and the feelings you want to experience- and think of small steps you can take to make that person possible. Set intentions that not only propel you forward, but give you the flexibility to face the hard days.

Being a human is not easy, and its even harder right now. So this new year, let’s be kind to ourselves and the people around us. Let’s be patient, and flexible, and okay with making mistakes. Let’s set intentions that build us up rather than resolutions that tear us down. We can do this.

You don’t need to understand

If you’ve been following this blog for a while, you know how I feel about Pinterest quotes. (And if you don’t, no need to worry! You can find all my thoughts right here πŸ™‚ ). So you can imagine my surprise when I found one tonight that I actually liked. I guess it’s less of a quote and more of a question, but regardless, it has none of the nauseating elements of a typical “inspirational” quote, so that’s a win for me.

It goes like this: “why do people need to understand everything”

Okay, okay. So it may have seemed cooler and more interesting in huge black uppercase letters with an artsy background. Reading it in times new roman or whatever this default font is does make it seem like an overdramatic English teacher wrote in in his sleep. But, that’s exactly why I love these words so much. They’re subtle, but they make you think. Why do people need to understand everything?

The easy answer is because it’s in our biology. Back in the caveman days, humans needed to understand things to survive. Get confused by which animals will eat you, and you die. But back then, things were black and white. Understanding them was easy. So our innate desire to “get” everything wasn’t an issue. But flash forward to now, when almost everything is some kind of muddled gray. In today’s world, nothing is simple. Our tiny cave clan has grown to a staggering 7 billion human beings, each with a unique life experience. 7 billion people, all with their own thoughts, feelings, hopes, dreams, and challenges. There’s no way we can all understand everything about ourselves, let alone that of everyone around us.

What I’m basically saying is we’re stuck. We’re stuck living with brains that need to understand everything about everyone in a society that makes it impossible to do so. And we’ve tried to adapt, by asking questions and making assumptions about people and groups. But it’s not good enough. We are never going to understand everything about each other. We are never going to know what someone else’s life is really like. And that is a really scary thought for a brain that thinks it needs to know everything.

So why do people need to understand everything? Well, if you ask me, they don’t. I’ve said it before and I’ll say it again: we don’t need to know what someone else’s life is like to support them. We don’t need to physically be in someone else’s shoes to show them empathy. Spending hours trying to make sense someone else’s situation is time that could be spent sitting with them, telling them that we’re here to talk. Researching someone else’s disease to try and get how they feel is time that could be spent reaching out to them, asking what we can do to help. As people, we spend so much time trying to understand everyone else that we forget to actually care for them. Knowing the ins and outs of someone’s life means nothing if you don’t actually support them.

But guess what? We can still treat people with compassion when we don’t understand how they feel.

No one owes you an explanation of their struggles to earn your support and your empathy. And you don’t owe one to anyone, either. Accepting, and including, and supporting, and empathizing with people, and doing all of the things that I write about on here don’t require you to understand that person. I don’t expect everyone in my life to know everything about my disease and it’s impact on me. I can’t expect that. But I also shouldn’t have to. Treating people with understanding is not the same as understanding what they’re going through. You don’t have to “get” me to show me support, just like I don’t have to “get” you to show it back.

So on this fine Monday, I challenge you all to do something. Stop trying to understand. Stop trying to make sense of the people around you, and instead, start focusing on how you can show them compassion. Don’t think about why they need that support- think about how you can show it to them, even if it makes no sense to you.

There are 7 billion of us on this earth right now. 7 billion human beings. And, if you ask me, I think we could all do a lot more good if we focused on treating each other with compassion instead of just trying to understand.

Don’t get too comfortable

Right now, we’re all staying pretty comfy. I would be lying if I said I didn’t show up to school in pajamas every day. I mean, what else can you do when you’re stuck at home besides amass a 50-piece loungewear collection?

Being physically comfortable is great; it brings a sense of coziness and warmth that we’re definitely missing in the real world right now. And who wouldn’t want to live their life covered in layers of fluff?

But there’s another kind of comfortable that can be dangerous if left unchecked. The kind where we cozy up in our own little personal bubble because it’s safe. The kind where we forget that other people aren’t like us because it’s easy. And the kind where we become complacent with society’s harmful norms because it’s just less complicated that way.

It’s great to be comfortable, if you’re talking about pulling on some fuzzy socks and grabbing a cup of tea. But ignoring key issues because they “don’t apply” is not the same as hiding under your favorite blanket.

We all crave mental comfort. It’s what humans do. It makes us feel happy, and calm, and safe. But sometimes we get too comfortable. We ignore things because we have the privilege not to care. We stop checking in because it’s easier to assume that everyone is fine. We don’t have the hard conversations because it feels better to stay put in the comfy walls of our own heads.

Now, you may be thinking, what’s the point? Why make ourselves uncomfortable when it isn’t going to feel good? Why take away the ease and security of staying within in our own minds?

My answer is simple: to create change.

To spark positive change, you have to leave your cozy little bubble. You have to face people and things that are hard and intimidating. You have to put yourself to the side and have empathy for the people around you. And doing that’s uncomfortable. Recognizing other’s people’s pain will often hurt you, too. But that uncomfortable feeling is what allows us to connect with each other. It’s what motivates us to support each other through our struggles. It’s what teaches us to feel empathy, which in turn motivates us to act with compassion. It’s what inspires us to fight for issues we wouldn’t have otherwise cared about because we can see ourselves in the people who are affected by them. Being uncomfortable is how we create positive change. It’s necessary, whether we like it or not.

A few days ago, I created an Instagram page for this blog. For me, this was a very uncomfortable thing to do. I didn’t want people to see me, or judge me, or think of me differently after learning about my disease. And yet, I did it, not because I wanted to feel uncomfortable, but because I knew that being uncomfortable was the first step to creating change.

If I want to change the way chronic illness and disability are viewed by society, I’m going to have to put myself in an uncomfortable position. If I want to teach people what IBD is like, I’m going to have to be vulnerable. And if I want to combat the ableism that is so harmful in our society today, I’m going to have to ask some tough questions.

To spark change in areas that we care about, we have to tear down our walls. We have to let people in. We have to start the conversations we don’t want to have, and ask for the help we don’t want to need. To spread awareness, we have to be vulnerable. We have to open up and be willing to do things that feel a little awkward. We have to be uncomfortable. And that’s okay.

So when you can, start the conversation. Ask the question. Make the statement. And most importantly, don’t get too comfortable.

A day in the (Crohn’s) life

I talk a lot about living the Crohn’s life. I mean, it is the title of this entire blog. But it’s come to my attention that I’ve never shown you what it’s really like. So I present to you: a day in my (Crohn’s) life.

Now, this isn’t to say that my experience is the universal experience because it isn’t. And this isn’t to say that my life revolves around my disease because it doesn’t. This is just a snapshot of what it’s like to be me: a bored 18 year old whose been stuck in her house for 8 months and often eats fruit snacks for breakfast. Oh, and she has Crohn’s.

So, here it goes:

7:45 am: 1st alarm goes off. It’s a really stupid jingle and I hate it. I’m not even half awake but I already feel like I’ve been hit by a truck. Is it the autoimmune disease? Maybe, but honestly I think we all feel this way these days. Whatever, back to bed.

8:11 am: You have class in 4 minutes. Just reminding you. Let’s watch someone decorate a cake on instagram before we get up though.

8:15 am: Wow those three steps to my desk were tiring. Time to teach myself chemistry!

11:15 am: Lunchtime! Don’t eat the leftover tacos. You stomach will die. This is not a drill. *eats leftover tacos*

12:15 pm: Woohoo, back to work. Your stomach hasn’t started hurting and you’re pleasantly surprised. And a tiny bit scared.

1:30 pm: 20 minute walk. My gym teacher considers it cardio.

3:15 pm: School’s over. Maybe I’ll start my homework.

4:53 pm: Wake up confused with music playing and the lights on. Have no clue how you ended up in your bed asleep in the first place. I guess being *this* cool is exhausting.

5:00 pm: Physical therapy time. Yep, at the ripe old age of 18, my spine is degenerating!

7:00 pm: Eat dinner. Do more homework. Riveting.

10:00 pm: Take a shower. Put on new sweatpants.

10:45 pm: Watch an episode of Criminal Minds. The perfect way to lull yourself to sleep.

11:00 pm: Hey, don’t get too comfy! You forgot to take your medicine. Nice try, pal. You peel yourself out from under the covers and go take them. Why are vitamins so huge? At least it’s not Humira night (mainly because that would require me to walk downstairs to go get it).

Now, you’re probably wondering, why the heck did I call this a “day in the Crohn’s life” when there’s hardly anything chron’s-y about it? I snooze my alarm. I go to school. I eat lunch. I do homework. I text my friends and watch tv. I do all the things everyone else does. I’m normal. Well, you do have a point. From the outside, my life is pretty normal. Maybe even boring. Sure, I might take a few extra pills, give myself shots every once in a while, and skip out on the popcorn, but other than that, I’m just your regular old teenager.

And that’s true. I am a regular old teenager. I have friends, and homework, and activities. I have fun and spend way more time watching food videos than I should. From anyone else’s perspective, my day is 100% typical.

But here’s the thing: it’s not what you do see that set’s my day apart from the average person’s- it’s what you don’t. You don’t see me waking up at 4, and then 4:30, and then 5, and then 5:30, all the way to my first alarm because of the pain in my joints. You don’t see me sleeping all afternoon just so that I’ll have enough energy to go to soccer practice. You don’t see me arguing with myself over whether I should take the pain reliever now, or in 2 hours, because what if it gets worse? You don’t see me wondering if that red mark is a scratch or a sign of inflammation. You don’t see me taking my temperature hoping I don’t have another fever. You don’t see me staring at the mirror for 10 minutes before taking my medicine being angry at the fact that I have to take it at all. You don’t see me reaching for my phone to text someone about how I feel, only to put it down when I realize that they won’t understand. You don’t see all the thoughts I have taking up room in my head just so I can get through a day of fatigue and chronic pain. You don’t see me laying in bed, exhausted, knowing I’ll probably think them all over again tomorrow. You don’t see me wondering if it’s all in my head.

That’s not to say that my life is crap, that I mope around as a prisoner to my disease, and that I live my life in constant pain and misery. I do fun things. I do “normal” things. I feel ok a lot of the time. But I also do hard things. I push through things. Some days, I give in to things. And most of that hard work is behind the scenes. Crohn’s is an invisible illness. It’s pretty much impossible see how it affects me. And in a world where we think we know one another based on how we see one another, that can be really tough.

Clearly, reading about a day in my life won’t let you know how it feels to be me, just as reading through a day in yours wouldn’t teach how it feels to be you. Because we all have our game faces that we show to the world, but we also have our hurdles. Our silent battles. And I’m not asking you to expose yours to the world the way I’ve done with mine; I’m just asking you to be aware. Know that ever single person you see has something going on that you can’t. And whether they want to share that thing with you is up to them. The important part is that you’re willing to support their fight even when it’s invisible to you.

You aren’t what you can do

Productivity: the dreaded P-word. Though it’s defined simply as “a measure of efficiency of a person completing a task,” our society has twisted the concept of “getting stuff done” into something much different, and not in a good way. In our world, we don’t see productivity as how well a person does something, but rather, how much that person is worth, and this viewpoint is as equally damaging as it is defective.

If you’re anything like me, thoughts about productivity are constantly swirling around in your head. “Am I being productive right now? Did I have a productive day? Why is everyone else so much more productive than I am?” And yet, this mindset that is forced on us by every part of society, whether it be at school, work, friends, or social media, is wildly unhealthy. We equate good days with checking off boxes and bad ones with getting nothing done, regardless of how we truly felt in those moments. We begin to judge ourself and others not by the qualities that make us who we are, but by how many “things” we’ve can do and how quickly we can do them.

But here’s the thing: productivity, at least in the way society views it, is not sustainable. Sure, checking of boxes may work for a while. It may even motivate you and make you feel good. But what happens when you have a bad hour, or a bad day? Are you suddenly a worse person because you couldn’t get it all done? No, of course not! But that’s what we’re led to believe. And when you live with something that throws a lot of bad hours and days your way, that belief is incredibly harmful.

I wish I could send a letter to every person on this planet that said in big bold letters, “Productivity is not a measure of your value as an individual!!!” and that it would be the end of the constant comparison and judgment of how we live our lives, but I can’t. As much as I want to, I can’t change the system we live in. What I can change, though, is the attitude we have towards ourselves and towards one another. So I’m going to try.

As someone who has lived the majority of their life with something that often makes it hard to be productive in the typical sense, most namely chronic illness and chronic pain, I’ve learned how to function in a world that wasn’t built for me (not that 8 am classes were designed with any sane person in mind). I’ve learned how to get things done without using that as a basis for my own self-worth, and I’ve learned that productivity is not all about cranking out essays, running miles, and cleaning drawers. Sure, we all have to get work done. But we also have to take care of ourselves, physically and emotionally.

So, if you’ve gotten this far into my rant and somehow want to keep reading, here are my top two tips for reframing the way you view productivity:

Tip number 1: Redefine it. Yes, productivity is about completing tasks and completing them efficiently. But tasks are not just essays and chores. One of the most important tasks that exists is taking care of your own health. Maybe for you, being productive is taking time to rest on the couch or eat a snack. Maybe it’s going for a run, or maybe it’s taking a nap. Maybe it’s saving your work for tomorrow so that you can go to bed early and get more sleep, or maybe it’s taking an extra long shower before you go to bed. Some days, if all you do is wake up, take your medicine, and eat a few meals, that’s ok. Taking time to slow down and rest your body and mind doesn’t mean you aren’t productive- it just means you’re being productive in a different way; a way that is best for you. Taking care of yourself is important, and it does “count” for something. So on those days where all you can do is take care of yourself, don’t write it off as a a “bad” day. Don’t say you didn’t get anything done, because you did. You worked towards your own health, and that holds a lot of value.

Tip number 2: Focus on your feelings. Too often, we judge our worth based on how much we can do regardless of how we feel doing it. But writing 3 papers in one day doesn’t make it a good day if you felt exhausted and terrible the entire time. Although it’s important to stay on top of work, it’s equally important to stay on top of your own emotions. If you have a fun day spending time with friends and watching tv, that is still productive – you are doing something good for yourself and your mental health! So rather than judging ourselves and our time by how much we’ve gotten done, let’s take a step back. Think about how you feel while doing things, and give yourself the time to take breaks when you need them. It feels good to check off the boxes, but if that’s all you focus on, you’re going to get burnt out. Give yourself time to do things that make you feel good, regardless of whether they fit into society’s view of “productivity.” Watching tv in your bed may seem like the most unproductive activity out there, but if it makes you happy and allows you to rest, than for you, it’s very productive! It’s not all about checking of boxes for external things – make sure your own health, physical and emotional, is at the top of the list.

Look, I’m no expert. I’m just a person like you who’s trying to figure it all out. I don’t have all the answers, and you may think I have no idea what I’m talking about. But I do know this: your value as an individual is not defined by how “productive” society thinks you are. We all have different needs and different challenges, and what productivity looks like to me is in no way what it will or should look like to you. So let’s stop comparing and stop judging ourselves and others based on how many boxes we can check off in a day, and start focusing on finding balance and lifting each other up. Because as much as society tries to force this view upon us, we aren’t a measure of what we can do or how fast we can do it. We’re so much more than that.

If you could tell the world…

I have a question for you. You get 5 seconds to answer (I’m counting). Ready? Here it is:

If you could tell everyone in the world one thing, what would it be?

Got your answer? Great. Hold onto it!

A few years ago, I published a post titled “If I could tell the world.” In it, I wrote about the things I wished everyone was more aware of. I explained that if I could teach the world one thing, I would teach it empathy. I even made an acrostic poem to spell out the word (thankfully I’ve moved past that phase πŸ™‚ ). But this time, it’s not about me- it’s about you. I’ve spent the past week asking people what they would tell the world if given the chance to teach it one thing. And this is what I learned.

To start off, the responses were striking. Some were funny, and some were serious. Some were simple, and others not so much. But they were all important, because they opened my eyes to a problem that we are facing and have been for a long time: Every person I asked was able to answer the question immediately. Every person I spoke with had something on their mind that they wished other people knew, but didn’t. So I started to wonder, why? Why are we all isolated by things in our heads that no one else understands? And how can we change this?

It’s not a problem of knowledge or communication. Yes, it involves those things, but it goes beyond that. It’s a problem of patience, of perspective, and of empathy. And it occurs because we get so wrapped up in what we want in our own worlds that we forget what other people need in theirs.

So, back to my question. I asked you to answer it at the very beginning. Now, I want you to think about your response.

How long has that idea been in your head? How many days, or months, or years have you spent thinking to yourself, “ugh, I wish everyone would get this?” And if tomorrow, everyone magically did get it, how would your life change?

If you’re anything like me, that “thing” has been floating in your brain for a long time. And if everyone could magically understand it tomorrow, life would be a whole lot easier.

So now what? You’ve identified what you want to tell the world, and it’s clear that if everyone knew it, things would be better! But if we all have a “thing” to share with the world, how can we possibly make those ideas known? No one wants to go around telling everyone they meet, “hey! I wish you understood x, y z!” I mean, I wish everyone understood what living with chronic pain is like. But, I can’t be expected walk up to everyone I know and give them a full-fledged presentation on the challenges I face. That’s draining, both physically and emotionally. So what can we do instead?

Our society is built on principles that make it very hard to support people who are different from us. We are taught that if we don’t “get” something, we don’t have to deal with it. That if someone doesn’t ask for our help, we don’t have to offer. That if someone isn’t clearly struggling, they’re totally fine. But here’s the thing: Telling people the details of our battles shouldn’t be the only way to get them to show us compassion.

It’s hard to open up to others. That’s why we all have those “things” we wish people knew, but don’t. That’s why most of us, no matter how frustrated we get, aren’t able to express the ideas we wish others understood. The though of sharing them is scary. It’s intimidating. But it’s necessary, and we can make it possible.

By reframing the way we see the people around us, we can become more open to accepting and sharing new ideas. By having empathy, we can connect with people who are different from us. We can care about problems that don’t affect us personally. And we can understand the feelings of other people even if we don’t feel them ourselves. At the same time, by having empathy, we can form an environment where people are more willing to share their ideas. If someone asks how I’m feeling in a genuine, empathic way, they are giving me the chance to help them understand my illness. And, by being involved in the conversation and showing that they care, explaining my challenges is no longer the taxing process I mentioned earlier. That conversation may still be difficult; It’s hard to talk about our struggles, and it’s hard to support someone you can’t relate to. But we have to push ourselves, both to share our thoughts and to invite the thoughts of others. Because if my little “experiment” has taught me anything, it’s that we all have something to tell the world. And we all deserve for everyone to listen.