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.

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.

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.

Namast'ay in Bed... Indefinitely.

It’s time to talk about chronic fatigue!

I know what you’re thinking–– that’s just a fancy way to say “tired.”

Extreme, chronic fatigue is a lot like love–– until you’ve experienced it yourself, it’s hard to really “get it.” That’s probably where the comparisons to love end, though. Fatigue sucks.

As a kid, I always thought migraines were just really bad headaches. Then I started getting chronic migraines and I was like “wow, this is a whole different universe of pain.” That’s how fatigue is–– it’s hard to conceptualize the extreme nature of being that physically exhausted until you’ve been there. But I’ll do my best to help explain!

Unless you’re a robot, you probably know what it’s like to feel tired. If you are a robot and are reading this, please email me. I would like to be your friend, like in the movie Bicentennial Man, until I die but you never die and instead just mourn me forever.

For all the non-robots out there, you know what it’s like to be tired. Whether it’s from not getting enough sleep, or a long day at work, or helping a friend move, you’ve maybe been tired a lot! Life is busy! It’s 2016! People always want us to answer all of our emails so promptly!

But take that level of physical exhaustion and now double it a few times, so it’s not just “tired,” but something that alters your thoughts and your joints and your whole being. It makes your body ache and it makes you lose your train of thought when you go to speak. And humor me for a second and imagine that no amount of rest would make that tired go away. You could nap, put your feet up, “rest your eyes” as my grandma would say, but you would still find yourself just as tired. That’s kind of what chronic fatigue is like.

Suffice it to say that sucks, amirite? And a lot of people suffering from chronic fatigue have it as the result of another illness, like Lupus or Endometriosis. For me, I experience chronic fatigue because of my Crohn’s disease, but I’m also treating my Crohn’s with a steroid that gives me insomnia. It’s like the medical life cycle of hell.

A past, flare-free and fun~ life

So why am I telling you all these depressing things about fatigue? Is it so you’ll feel bad and donate to a GoFundMe I’m creating for a new, bionic body that doesn’t get tired? More logically, it’s because it’s important to know these things if you have a fatigue sufferer in your own everyday life–– which many of you probably do.

I’m 24 years old, I live in the third biggest city in America, and I really love to go out with my friends. When I’m not in a Crohn’s flare, my social life often involves 24 hour diners, requesting Beyonce at 4 AM bars, and occasionally puking on my own stylish ankle boots. I tell you all of this because after over a month of being in a flare, I really feel the need to remind the world that I CAN BE FUN, GODDAMMIT.

The problem is that when I’m sick like I am now, the fatigue takes all of that and pretty much says “nope!” For a while I couldn’t even go to work, and now I’m super proud of the days where I can make it through a whole work day and almost immediately pass out when I get home. That energy level makes it a bit hard to do things like go to happy hour or attend a friend’s party.

Life in a flare? More naps, more Netflix, more icy hots.

So if you know someone who suffers from chronic fatigue, or any chronic illness that may be accompanied by it, cut them some slack if they have to leave the party early or can’t make it to whatever cool thing is happening this weekend. Believe me–– they wish they could. They want to be able to do all the “normal” things, but being young and sick isn’t normal. So sometimes it’s important to make allowances and realize that while a night in with Scandal and some tea may sound like a homebody cop out, fatigue isn’t a made up symptom, and it doesn’t just mean you’re “over tired.” Your body physically needs the rest like it needs medicine.

Living with fatigue means constantly fighting your own internal clock for a few more hours to get things done. It means anxiety and feeling like a bad friend when you have to cancel plans because you physically can’t make it out. So fight on, fellow fatiguers! Take a break when you need it! Invest in a onesie and a lavender scented candle! I see you, I support you, and I will now be going to sleep.

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.