I Kind of Need You to Stop Asking if I'm "Better"

It’s rare, in this wacky journey that is my chronic-illness-having, that I openly express frustration. That’s mainly because I don’t think it’s all that productive, and I have had productivity beaten into me for all of my honors student life. I’d much rather spend my time talking and commiserating with other cool, chronically ill people, or educating friends and family on what it’s like to have a sickness that isn’t going away. But some days, the frustrated part wins. It wins hard.

The frustrated part comes out when my steroids are giving me insomnia, and I only slept three hours a night this week. The frustrated part comes out when my hair starts falling out every time I touch it. The frustrated part comes out when I realize my meds have given me a weird hand tremor and suddenly I feel way more like someone’s great aunt than like a 24 year-old.

But socially, the frustrated part comes out when someone asks the question I’m constantly dreading: are you feeling better?

The reason I dread this question so actively is because there are no answers to it that will make the people in my life happy–– which is something I desperately want to do. I would love to tell you that yes, in fact, I have miraculously come out of this flare and it will probably never happen again and, as it turns out, I am healthy as a horse. Turns out, though, that would be as honest as telling you that I just met Beyonce and she asked me to model her new athleisure line. Which is to say it’s a big old lie, or just a dream I had once.

I’m not a total pessimist. Some days I am feeling better! And in the moment you ask, I just might be. But the problem is, I’m living in a really long flare. And when this flare ends, I’m not sure how long I’ll have until my health turns on me again. That’s the nature of chronic illness: unpredictability. I have good days and bad days. Honestly, it changes down to the minute. Last week I called my mom in the morning to tell her I was feeling better than I had in weeks and I was ready to take life on–– and by 6 PM, I was in so much abdominal pain I was crying on my bedroom floor, popping Norco like it was a pill in Ibiza. (Am I using that pop culture reference right? I haven’t been out in a while.)

So when you ask if I’m feeling better, I feel obligated to tell you yes, because it’s understood that it’s what you want to hear. If you have a chronically ill person in your life, I’m not saying you should assume they feel like shit all the time and not ask at all. But there are ways to talk about illness that come off as genuinely curious and helpful that don’t make the person in question feel bad for not feeling better. Great things to say include “Hey, just checking in to see how you’re feeling. Thinking about you,” or “Can I come over and watch Unbreakable Kimmy Schmidt with you until we both melt into the couch cushions?” Showing you care and are trying to get it will go a million and one miles to getting someone to open up to you about how they really feel–– which might not be better, but will be important to hear.

I've Accepted My Illness–– Now I Need Everyone Else To.

Accepting my illness has been a long and winding road full of denial and super powered laxatives.

But finally, over six years after my initial diagnosis and about a decade after suffering from symptoms, I feel like I’ve accepted it. Crohn’s disease doesn’t define me, but I’ve made space for it in my life. It’s a part of me, for better or for worse, like an extended family member you don’t particularly like but deal with because you have to.

I was diagnosed right after my 18th birthday–– arguably not the most responsible time in someone’s life. I was always a smart kid with a good head on her shoulders, but I was nowhere near ready to deal with the implications of a chronic illness that wasn’t going away. No one prepares you for being told “You’re sick now! Forever!” when you’re looking out on the rest of your life from high school.

Years of doing the bare minimum has put me in a bad health state since about a year ago, and now I am amidst a months-long flare. It’s awful, but as an optimist, I’ve chosen to look at what the experience has taught me. It’s taught me to cook, and to take care of myself, and to prioritize my health. It’s taught me that I need sleep, and that follow up doctor appointments are more than just mere suggestions. If anything, taking my health away in such a dramatic fashion has made me fight for it that much harder, which is something I won’t soon forget, even after this flare ends.

So I’ve (pretty much) accepted my illness at this point. I still have days where I cry, or complainathon to my sister about how unfair it all is, or when I get a medical bill that makes me worry for my financial future. But for the most part, I’ve carved out some space in my life for my Crohn’s, where I can do my best to manage it hands on. I stay in when I need to, even if that’s almost every night. I buy a lot of icy hots. I don’t eat all the delicious fried foods I used to inhale on a daily basis.

Oddly enough, the hardest part wasn’t my acceptance of my situation–– it’s everyone else’s. I spend wholly too much time worrying about how others will react to my symptoms. I worry talking about it will make them uncomfortable. I feel a pang of guilt every time I cancel a plan. I vacillate between wishing people understood better to knowing I need to cut them all some slack. This isn’t an easy thing to understand.

But sometimes, helping others accept the truth of my situation can get a bit exhausting. Explaining that yoga won’t cure me, and neither will a juice cleanse. Explaining that I can feel terrible one day and okay the next, in a seemingly random yet endless cycle, and that seeing me out doing something does not mean I am suddenly healthy. Explaining that asking me if I’m “better yet” or “still sick” just makes it harder for me to accept that no, I’m not, and yes, I am, and will be for the rest of my life, unless someone finds a cure. I know that people ask because they think they’re being optimistic or helpful, and that it’s hard for healthy people to swallow the fact that a 24 year-old girl is sick all the time. But if I can accept, and the tens of thousands of other chronically ill young people out there can accept it, so can you.

So what can you do? You can understand that this is for life, but that I’m learning to deal with that. You can offer a listening ear when I need to be angry or cry. You can indulge me when I want to grab lunch instead of bar-hopping. You can choose not to give up on me, even after I’ve had to turn down plans for the eight millionth time.

Here are just a few of the most thoughtful and helpful things my friends and family have done for me this year that show me they care and, even if they might not know what it’s like to be chronically ill, they’re trying to understand: mailing me toilet paper with Donald Trump’s face on it, because laughter is the second best medicine (morphine is the first). Texting me at 3 AM  while out at a bar because my insomnia was in full effect and I wanted to live vicariously through someone else. Sending me a cookbook of recipes I can eat. Surprising me with little gifts to put a smile on my face. Driving over an hour each way to my apartment to eat lunch with me because you knew I was feeling isolated. Giving up a fun Saturday night out to sit on the couch and watch a bad movie with me. Asking me, in a genuine way, how I am feeling on any given day. Making me feel like less of a burden.

Clearly, I have some amazing people in my life. My goal now is to make everyone as understanding about chronic illness as the people I’m talking about in that last paragraph. It would make the world a much nicer place, don’t you think?

Home Is Where The Heating Pad Is

Crohn’s disease, like any illness, isn’t just one thing.

Sometimes when commercials explain it, it just gets broken down to “something that fucks with your stomach.” While it absolutely does that, there’s a lot more to it. And among the super fun myriad of other symptoms, the one I want to talk about today is anxiety.

A lot of people tend to want to separate the physical and the mental when it comes to illness, but I tend to disagree. Diseases like Crohn’s or Colitis or any number of health issues are pretty much tailor-made to make you anxious. Think of it this way–– you need food to live. And on a less dramatic level, going out to eat with friends and family or attending dinners at other people’s homes is a pretty standard part of life. So if you have an illness that makes your eating situation more complicated, it’s easy for anxiety to accompany simple things like grabbing dinner with a friend or attending Easter brunch.

An over-priced candle ups the mood, ya know?

Additional anxieties can stem from less-than-fun GI symptoms as well. As someone with Crohn’s, I can’t exactly go on a random adventure hike with no destination–– always need to know where the nearest bathroom is. It’s not very glamorous, but it’s necessary.

The last major area in which chronic illness gives me anxiety is in other people’s perception of me and my disease. I never want anyone to think I’m being overly dramatic, or a hypochondriac, so I’m often hyper-accommodating even when it’s not best for my symptoms. If a friend wants to hang out and I’m too sick to, I may shuffle through and make it happen so I don’t feel guilty. Conversely, I may lie and come up with what I think is a more palatable excuse than “I’m too sick to go out today.”

All of this is to say that with a chronic illness, it’s easy to become a big ball of anxiety thanks to the littlest of everyday things. But then what do you do? Live your life like a bad Woody Allen movie? I’ll personally pass on that, as I’m not into dating my relatives. What I have found supremely helpful is finding and cultivating “safe spaces.”

Safe spaces can mean different things for different people. I am luckier than most because my workplace is one of my safe spaces. Part of that was inherent when I was hired–– I work for a very small internet company that has a pretty familial feel. I can wear leggings to work (great on bad pain days), and because of what I do for a living (web content), if I’m particularly ill I have the luxury of working from home. Also, because my office is small, I’m not just a number on a list of employees. My bosses and co-workers know about my medical problems and have always been wildly understanding.

I know I’m very lucky in this respect–– not everyone with a chronic illness has a workplace they’d deem “safe.” For economic reasons people have to take the jobs they can get, sometimes forcing them to work on their feet all day, making symptoms worse. In those cases, hopefully other safe spaces can be created to balance things out. Like the home!

I just moved into a new apartment, and I have quickly gone to work making it a safe, happy space for my Crohn’s. My room is a great safe haven after long days, with fluffy blankets and candles and a heating pad and Netflix and no fewer than two cats. My kitchen is also a safe place, because it’s where I make all the foods I know won’t hurt my body and exacerbate my symptoms. I’m nerdily obsessed with my new ninja blender. If work or school can’t be a safe haven for you, home is always a good place to create your own little bubble of happy. In the literal bubble sense, too–– go buy some bath bombs and relax your ass off.

Gettin' that college degree, y'all

If you’re still in school, I highly recommend being open with administrators and professors about your illness if you feel comfortable doing so. My university had an attendance policy that would have been nearly impossible to meet thanks to my Crohn’s, but after reaching out to our school’s disability services office, I was able to get special allowances from my professors to do work from home when necessary and even have separately proctored exams in case I couldn’t sit through one for a full hour. As a result, I went from struggling to graduating with a 4.0.

The moral of the story here is: anxiety blows, but it can blow considerably less if you’re open about your conditions and take the appropriate steps. Do what you can to make yourself feel happy and healthy in the places you spend the most time, and don’t be afraid to ask for help when you need it. People will surprise you with how wonderful and understanding they can be.

Why Is It Taboo To Talk About Illness?

There’s an old adage that tells us there are certain things we don’t talk about in polite conversation: religion and politics.

I’ve never been great at polite conversation.

There’s also a quote from the (best show of all time) Buffy The Vampire Slayer that eloquently states: “Tact is just not saying true stuff. I’ll pass.” Because I am an adult with a job, I understand that tact is often necessary in various situations, like in a professional meeting, or at the DMV. But in conversations with friends and family (or the ENTIRE INTERNET, hi guys), I like to think we can all let loose a little and say the true stuff.

And in addition to the squirmy topics of religion and politics, I would like to pose one more: illness.

Illness is not a comfortable thing to discuss because, like politics and religion, it’s personal. Talking about your experiences opens you up to judgment, which is a terrifying and vulnerable thing. I started this blog because writing is my personal catharsis, but sharing such specific details of my life does come with a certain amount of self-consciousness. Will this change how people see me? Will this affect opportunities in my life because I am now publicly putting myself out there as “the sick girl?” Will people quietly judge, and think I’m doing this for attention?

These are all great reasons not to talk about your illness, and just hole up with Netflix and your doctor’s phone number and try to deal with it solo. But the thing is, I’ve tried that. I’ve tried pretending the sickness isn’t there, and that I can do all the same things a perfectly healthy person can do. I’ve tried not talking about it so I don’t make anyone feel awkward or uncomfortable. And you know what? It felt super lonely. You can’t live your life in a bubble of cats and books and denial. (Just kidding–– that sounds great? Maybe just remove the denial part and talk to some friends about how you’re feeling. Keep the cats and books.)

But since I recently started talking publicly and openly about my illness, I have come across a million and one better reasons that you absolutely should talk about it. I’ve gotten supportive messages from friends and family. I’ve had old acquaintances and friends of friends reach out with stories of their own chronic illness struggles. I’ve gotten powerful advice and kind words and all kinds of encouragement. I’ve gotten, to appropriate a book title, the opposite of loneliness.

In sharing my experience, I am simply trying to normalize it. In sharing a photo of me getting a biologic infusion, or me in a hospital gown prepping for a procedure, I am not seeking attention or pity. The truth is, there are millions of people out there who spend a lot of their free time at the doctor, or the hospital, or the Walgreens picking up their latest prescription. And if we don’t recognize those stories, and talk about them, they become even more weird and taboo. So I’ll take one for the team and tell my stories–– plus, I find hospital gowns to be really slimming.

And it’s nice to know there are others out there sharing those stories too, and educating their friends and family on their day-to-day experiences of being ill. On a day when my symptoms don’t allow me to do what I like to call “normal people stuff,” the stories of others going through something similar comfort me. Not because they’re struggling–– in an ideal world, we would all be as healthy as that lady who lived to be 110 drinking only Dr. Pepper–– but because they’re getting through. Like me, they’ve got some stuff holding them back, but they’re getting through in spite of it all. And when you’re up with insomnia watching CNN at 3 AM, it’s kind of cool to know there’s a network of other people out there, whisper-yelling at the pundits with you.

Invisibility Isn't All It's Cracked Up To Be

As a kid, I thought it would be awesome to be invisible.

Like any superpower, it had its theoretical perks. I could spy on my parents while they wrapped Christmas presents. I could sneak into R-rated movies. I could stay up past my bedtime and watch “Law & Order.”

As an adult, ironically, I have an invisible illness–– and the invisibility thing isn’t exactly what I thought it would be. “Invisible” refers to diseases and disabilities that can’t easily be seen or noticed from the outside. They’re illnesses that ravage your insides but leave you looking just “normal” enough for everyone else’s standards that it’s sometimes hard for people to believe you’re really sick.

Wearing hoop earrings to my infusion because you can be sick but still look fLy~*

I don’t have a walker to denote that I’m in ill health. I don’t have an oxygen tank, or a big scar. Some days the circles under my eyes may be a bit more pronounced, or my prednisone may be making my hands shake, but for the most part I look like your run-of-the-mill 24 year-old girl. For this I am blessed. I don’t need a walking aid, or something to help me breathe. I haven’t lost a worrisome amount of weight. But that’s where things get tricky–– because I am still sick, appearances be damned. And sometimes when you don’t look as sick as you are, people have higher expectations of what you can and can’t do.

Even though you can’t see it with your eyeballs, on a bad day, I may be too weak to carry some bags up to my apartment without becoming super winded. Standing for long periods of time may be difficult for me. My stomach may be in so much pain it’s hard to focus. But because you can’t physically see it, I tend to keep it under wraps as much as I can–– which sometimes means pushing myself to do too much because I want to feel as healthy as I look, and I’m bitter that I don’t.

The biggest problem in all of this is that it’s often hard for people to believe that patients with invisible illnesses are actually sick. It’s easy to be skeptical of something you can’t readily see, even if it is real (like GHOSTS, guys. Or aliens.) This leads to stress for the sick party. What if your work gets fed up that you, a seemingly healthy person, has to keep missing shifts because you’re sick or have yet another doctor’s appointment? What if a friend is upset that you missed out on an important event because of your illness when you look perfectly fine? What do you say to the acquaintance who drops the classic line “but you don’t look sick?”

Yesterday was a really bad pain day for me–– one of my safe foods backfired on me and I was feeling dehydrated, shaky, and in immense abdominal pain. Luckily when I got on the bus to go home, there were a few seats left, so I snagged one. Being able to sit on my commute home made a huge difference, helping me feel not quite so faint. But a middle-aged woman did heavily sigh when she saw me seated while others were standing. I understand where she’s coming from–– I look like a kid, aren’t I healthy enough to stand and let a 40-year-old woman take my seat? But the problem with those kind of assumptions is that they aren’t always true. You know what they say about assuming? It makes an ass of you and me. And my ass is the one that’s gonna go on that bus seat, lady.

So in honor of all those struggling on through the invisible illness game, try practicing some judgment-free empathy in your own life and hopefully, over time, that good karma will come back your way. If you see someone who you assume is healthy using a handicap spot or taking the last seat on the bus, don’t let your mind automatically go to a place of assumptions. If you have a coworker or friend who’s always flaking because of illness, try not to question their motives or look for “signs” that they’re really sick. “Sick people” come in all shapes, sizes, ages, and ability levels. They look just like you–– they just also happen to have a slightly overrated superpower.

Make 'Em Laugh

Comedy has always been an integral part of my life. From the early days of staying up late to watch "Saturday Night Live" with my dad to high school nights spent doing weird bits with my best friends, I’ve always leaned toward the more sarcastic side of life.

Sometimes jokes are just for fun, but they’ve also always been a great coping mechanism for me. Some people might call it a crutch, but those people are just well-adjusted assholes who can’t be trusted. Whether it was a fight with a friend or my parent’s divorce, joking about it has always made the bad stuff feel a little bit more manageable. If you can take something that hurts you and use it to make other people laugh, you’re turning it into something kind of beautiful.

When it comes to chronic illness, arming myself with a good sense of humor has been the greatest tool in my arsenal. Don’t get me wrong–– I have bad days where I just want to sit and wallow about how shitty things might be at that particular moment, no jokes allowed. And conversely, there are people who deal with their illness with unending positivity about silver linings and how things could be worse. But on most days, I opt for a different approach: making a joke out of the seriousness. And with Crohn’s, it’s easy to do–– doctors have literally stuck a camera up my butt on multiple occasions. If that doesn’t lend itself to comedy, I don’t know what does.

Saying something gross to strangers

Disclaimer: this approach probably isn’t for everyone. Sometimes, joking about a serious illness can offend, which is totally fair. But there’s a really great quote from the movie “Garden State” said by Natalie Portman’s character, who suffers from epilepsy, and it’s always stuck with me:

“What do you do? You laugh. I’m not saying I don’t cry but in between I laugh and I realize how silly it is to take anything too seriously.”

I’ve always tried to take this same approach. Let yourself feel your feelings–– if what you need that day is a good cry, do it. It feels great sometimes. But if you feel the need to make light of something heavy, lean in to that feeling. It can be really cathartic.

I have been blessed with a group of wonderful weirdos that I have called my best friends since about the age of ten. Nothing is really off limits for us to joke about, which has made my Crohn’s experience so much lighter and easier to handle. I don’t have to worry about burdening them, or grossing them out, because they’re the first ones to crack a joke about my messed up colon. During this most recent flare, one of my best friends sent me toilet paper with Donald Trump’s face on it. Best “get well soon” gift ever.

My best friends. They are impossible to out-gross.

Being able to joke around with the people you love makes talking about your symptoms a lot less alienating. That’s why it’s important to set the tone with the people in your life. It’s hard to know what to say when someone tells you about their medical problems. Do you say you’re sorry? Do you say it’ll get better? Do you ask questions, or respect their privacy? It honestly all depends on the person, so it’s up to us (the sick persons involved) to lead the way. I like answering questions about my disease because it raises awareness, and I like joking about it because it helps me and others cope. So I always try to set that tone early, so people know it’s okay to ask, and that it’s okay to joke.

So when you see me making light of something like hand tremors or painsomnia, I promise I’m not just being a terrible human being, or feeling sorry for myself. I’m trying to come to terms with some no-fun stuff by making it fun in any way I can. I’m not looking for pity, or a reassuring platitude about how it gets better. I’m just looking for some understanding, and maybe some more friends who can get down with a poop joke.

My Jeans Are Too Loose, And For This I Am Conflicted.

This morning I put real pants on for the first time in three weeks.

Living that “Crohn’s disease flare and also having the flu” life, I’ve stuck mainly to leggings, if not straight up pajamas for weeks now. I’m lucky in that I work at a web startup where leggings and big sweatshirts are the norm, so I’ve gotten away with stretchy pants that don’t push down on my intestines for far too long now. But today, Chicago weather had other ideas, and I knew real jeans would be necessary.

I went to reach for my loosest pair of jeans as to not push it, and put them on to find they are way looser than normal. I am now, as I type, wearing what was formerly my tightest pair of jeans–– only they’re not anymore. They’re too big.

Now, as just a regular 24-year woman, this whole blog post probably sounds like a really awful humble brag. We get it, Sam. You lost weight. Good for you! Also, maybe go to hell?

But as a chronic illness-having woman, weight loss is a bit more complex, and usually comes as a result of being super sick for a period of time (at present, my diet consists mainly of foods that look like they were already digested by a mama bird). Not that we really need something to complexify body image for women in 2016. We’re living in a whirlwind of messages. Fat shaming is rampant. Skinny shaming is a thing. Love your body, but also maybe go paleo and gluten free or better yet only eat seeds? It’s honestly hard for even 100% healthy women to keep up with all the bullshit.

Point being, weight is complex, and something we should probably stop trying to put into convenient boxes and infographics for Pinterest consumption. Some women are skinny and healthy. Some women are bigger, but still healthy. Some women are gaining weight for reasons beyond their control, like medication or thyroid issues. Some women like myself are losing weight for reasons beyond their control. Am I happy every time someone tells me I look like I’ve lost weight? Of course, I want to be Kendall Jenner as much as the next person. But do you know what’s better than compliments on my thinness? LITERALLY ANYTHING DIPPED IN CHEESE SAUCE.

So maybe what I’m saying is this: if you’re in decent health, cut your body a break. Skinny doesn’t always equal healthy. Keep an eye on things like blood pressure and cholesterol levels, but don’t beat yourself up over that one picture your mom posted on facebook where it kind of looked like you maybe had an extra chin. Chock it up to lighting and enjoy your life and also a hot dog.

Because as a reminder, people who say “nothing tastes as good as skinny feels” are liars. Really hungry liars.

Living My (Grandma's) Best Life

I have officially become my grandmother.

I know all girls worry about becoming their mothers, which is fair, but to be honest my mom gets more shit done in a day than an entire olympic curling team, so becoming her would not be that bad. I would make a really great omelet.

But I have surpassed my mother and skipped straight to my Gramma. My Gramma, may she rest in peace, was a lovely woman at her best and a wildly stubborn one at her worse. She was tenacious as hell and in my memories, always incredibly tough. She was also always ill.

From the time she was a toddler, my grandmother suffered from a wide array of disabilities–– so wide, in fact, we’re not even quite sure we know what all was included in her diagnosis. She grew up sick, and it only worsened as she got older. I have plenty of great memories of time spent with my Gramma, but in none of them is she healthy.

And in only the way a child can, my memories were also supremely about how all of this affected ME. I often dreaded calling my Gramma up to say hi because the conversations were never pleasant–– they were always about how bad she was feeling. Seven-year-old me just wanted to shake her and say “Let’s talk about something happier! You’ll feel better if we talk about more positive things!”

Well, in an interesting karmic twist, I have officially become my grandmother–– the perpetually sick person in the room. And it’s turned out to be good thing, because it’s allowed me to understand her better. It’s also allowed me to better understand why some of my loved ones don’t seem to “get it,” and why they drive so hard toward positivity on days I just need a listening ear for my litany of complaints (because, as we have discussed, I am a narcissistic beast).

Because when you’re sick, like my Gramma was or like I am or like anyone with chronic illness(es) is, it can consume you. When I’m not actively in a Crohn’s flare, I can go weeks without mentioning my condition, or thinking about it, or wanting to talk about it. During those times, it’s easy to be positive and post Instagram platitudes about keeping your head up.

But when you’re in a bout of being really sick, to the point where it’s hard to walk, or eat, or sleep like a normally functioning human, it takes up a lot of real estate in not just your body, but in your brain. You spend a lot of time alone, watching tv or reading a book because you’re too tired to go out. You have a lot of anxiety about doing anything that might make you feel worse–– including things as simple as lunch with a friend. And with all of your time and energy going into feeling the bare minimum levels of functional, it’s hard to think about anything else. You don’t have a fun story about what happened at the bar last week to contribute at friend story time–– you just have a fun story about how your new steroid is giving you insomnia, and late night tv is literally OVERFLOWING WITH FULL HOUSE RERUNS.

So when someone asks how you are, you know you should say “good,” and move on. Or better yet, bring up the latest craziness Donald Trump said or who you think got robbed at the Oscars. Almost anything is easier to say than “I’m in a lot of pain,” but for some reason, it’s all you want to say. Because not saying it makes you feel isolated.

I’m not sure what exactly I want people to say when I tell them about my experience or my symptoms. The most common response is something along the lines of “feel better soon,” and while I appreciate the sentiment, I would much rather just have someone acknowledge that it sucks. And that it’s not a cold–– I won’t get better soon, and the best way you can help me in the interim is by listening, and maybe by sending over some movie recommendations. I’m running out of rom coms.

Positivity is great, and has its place in coping. It’s a big, shiny place, where I get sick of feeling bad for myself and learn to love eating mostly pudding for months at a time. But before that place often comes feeling really shitty. So if you’re friends with someone with a chronic illness, I get it–– I get the desire to push them towards the shiny, positive pudding place. It’s easier. But it’s possible the best thing you can give them is an empathetic ear to rant to. And maybe some mashed potatoes.