I'm Bad At Keeping Secrets

I’m not someone who has many secrets–– clearly, considering my social media footprint is as big as a continent.

But I do have a few, like the level of embarrassing songs I sing while cleaning my house, or the 90’s celebrities I still occasionally have dreams about marrying. My biggest secret as of late? I’m feeling better.

You’re probably asking yourself why the hell that would be a secret. After 8+ months of Saturday nights in, a monumentally bloated face, and a diet more restrictive than Beyonce-inspired veganism, wouldn’t I want to shout “I’M FEELING BETTER” from the rooftops?

Other things that will make you feel better: new lipstick, dramatic hair changes.

Yes and no. I’m thrilled to be feeling better. I’m thrilled to be weaned off prednisone. But what most normal-health-functioning people don’t realize is that for the chronically ill, “better” is a spectrum. I don’t go from sick to well in a day flat. When I say “I’m feeling better,” it simply means that currently, I’m having more good days than bad days, which is something to celebrate.

But if I take that celebration public, I’m nervous about the response. I’m nervous that people will assume “better” means I’m back to my vodka drinking, burger eating, dancing-til-the-bars-close self (and believe me–– I wish that were the case. That girl was fucking fun.) I’m worried if they get it in their heads that I’m “better,” they’ll assume all the bad days are behind me. They’ll expect too much, and they’ll be disappointed.

So I guess I’m outing my secret right now–– I’m feeling better. My hair stopped falling out. I’ve started to drop some of the weight prednisone packed on me. I’m getting more sleep. I can occasionally eat candy and chips and not worry my intestines are gonna fall out of my butt as a result.

On the flip side, the fatigue still lingers like a bad ex-boyfriend who won’t stop texting me. I still go to bed at around eight most nights. I still take ten pills a day, on average. I still have to stick to a diet of mostly bland foods like fish, bread, and eggs. I’m still dying for a cheeseburger and a big ass sangria.

Feeling good enough to spend the day with my best friends and their moms a few weeks back

So maybe instead of saying I’m better, I’ll just say I’m on an upswing. I can finally see the light at the end of the tunnel that’s been this flare. I know now that an autoimmune disease isn’t something you can just ignore and hope it goes away–– it’s part of my life, and I’ll always be at risk of another life-altering health situation. But I’m choosing to be cautiously optimistic about the parts of me that are feeling better. And I’m choosing, based on writing this, to stop keeping it a secret.

So HEY GUYS, I’M FEELING BETTER. Let’s just celebrate the news at like, 5 PM so I can still be in bed by 8.

The Glamorous World of Traveling With Chronic Illness

In the immortal words of The Go-Go’s: Vacation, all I ever wanted.

Vacation is fucking fantastic. You get to take time off of your job and real life and instead spend it in some exciting new location. You get to eat and drink and shop like there’s no tomorrow, because things like credit card bills and extra pounds are a problem for your post-vacation self. Vacation-you is great and carefree. Vacation-you is your best self.

A particularly good wall for taking vacation pics

But when you’re chronically ill, sometimes even exciting stuff like vacation can have a black cloud of anxiety hanging over it. While a normal 24 year old has to think, “did I pack my floppy hat? Is it too much if I bring my selfie stick?” a chronically ill traveler has a much longer list of concerns to deal with.

Among these concerns includes, but is not limited to: whether their body can handle the weather in their given destination (those with diseases like POTS often can’t be out and about in extreme heat and humidity). Whether or not they have their full supply of meds for the length of their trip. Whether or not there will be easy access to bathrooms (aka, camping is difficult). What hospitals are near their hotel. What they’ll be able to eat at their destination. Whether or not they’ll be well enough when the time comes to actually go, or to enjoy their time on the trip they’ve spent time and money planning.

When you take all of that into account, it’s no wonder a lot of chronically ill folks are hesitant to commit to trips, no matter how fun they may be. I’ve definitely said no to travel plans because I knew they’d push my limits too much. But that’s not to say I never travel, or that I can’t–– as a matter of fact, I just returned from an absolutely awesome girls trip to Nashville. I just have to be smart about it and always plan ahead. So without further ado, here are my ~expert~ tips for traveling with a chronic illness.

Taken after a long day of eating, getting tatted, ghost touring, live music, and more eating.

Choose your travel companions deliberately.

If you’re struggling with a chronic illness, nothing will add to your anxiety more than traveling with people you aren’t comfortable with. It’s hard to advocate for yourself and your needs in general, but even harder if you don’t know your travel buddies all too well. So maybe try to avoid a big trip with your boyfriend’s whole extended family or a backpacking excursion with your co-workers and instead opt for those who know you best, like close friends and family. Nashville was made much easier by the fact that I was with two lifelong best friends who never questioned it if I needed to take a break or pop some pills.

Bring ALL THE MEDS.

Don’t just being enough for the days you’ll be gone–– you never know when a flight might get delayed and you could be stuck in a strange city for an extra day or so. Bring extras, and don’t keep them in your checked bag! Airlines lose luggage. It’s a sad fact of life, like how we sometimes have to go to the DMV or kiss our great uncles. Keep your pills on you at all times so your lost luggage doesn’t turn into a medical crisis. And remember that big pharmacies like Walgreens are nationwide and can usually supply you with an emergency refill enough to last a few days.

I may not have been able to eat any of this BBQ, but I can still appreciate its beauty.

Make your own fun!

Because of my Crohn’s, I can’t currently drink. This has the potential to make most vacations kind of suck. But as cliche as it is, “you don’t need to be drunk to have fun!” holds true if you want it to. Instead of getting blackout like every bachelorette party in Nashville, I focused my attention on other fun stuff, like eating biscuits and taking pictures in front of basically every Instagram-worthy wall in Tennessee.

Don’t be afraid to ask for accommodations.

Need early boarding? Ask. Need a wheelchair to get around the airport? Ask. Never be afraid to advocate for yourself. Some people might get weird about it, but those people suck anyway and should be handily ignored. I have a card that I carry with me at all times saying I may medically need to use the restroom at a moment’s notice and legally requires businesses to let me use theirs. At home I’ve never had to use it because I’m pretty well-versed on where all the best unlocked bathrooms are–– but in a new city it was really comforting to have it in my wallet, especially in touristy areas where every shop advertises “no public restrooms.”

The view from my Friday night in Nashville: my hotel bed

Take charge of plans.

I’ve always been a planner, so this part comes naturally to me, but taking charge of planning can do a lot to ease travel anxiety. I have some pretty extreme dietary restrictions, so I dealt with that by thoroughly researching Nashville’s dining scene ahead of time. I knew where I could eat and where I couldn’t and presented options to the group that would make everyone happy. In the end, we all got some bomb ass biscuits, and what else do you really need?

Rest when you need to.

This last bit can be hard. When you’re on a vacation that you spent money getting to, staying in a hotel you’re paying for, you’re going to want to make the most of it. You’re going to want to go non-stop, seeing everything there is to see. But it’s important to listen to your body if it’s yelling at you to stop. On my last night in Nashville, instead of doing some Dolly Parton karaoke, I was laid up in a hotel bed drinking ginger ale and watching reruns of Law & Order. While this isn’t the ideal way to spend a vacation, I’m glad I listened to my body–– pushing myself too hard has only ever made me sicker, and I was still able to pack plenty of fun into a four day trip even with that night of rest.

So go forth and see the world! Just do your research first, and maybe bring a heating pad.

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.

TBH

It is 6:08 PM on a Friday night. In summer. In the third largest city in America.

I am sitting on my couch, listening to a relaxation playlist on Spotify while my cat kneads my stomach fat.

The excitement of my night will likely be what marinade I choose for the fresh salmon I bought on my way home from work, and what movie I choose on Netflix.

Such has been an accurate description of almost every Friday night I’ve had for the last 5 months.

The most exciting thing I did this weekend was read in the park

Sometimes, this is fine. Sometimes I relish in the slow and hazy schedule of not being able to have a real schedule. I tell myself that I am super zen about the whole thing and that I have accepted my current lot in life. That I’m cool with spending age 24, the so-called “prime of my life,” in a health-induced purgatory because “it is what it is.” Sometimes I mean it.

Sometimes, this is really not fine. This week, I had a good day. A day where for most of it, I pretty much forgot I was sick at all. I went grocery shopping, did some cooking, got my nails done, and went to a wonderful dinner with a group of my closest friends. I ate great food on a patio in the warm weather and told stories and laughed and read our horoscopes. I actually found myself thinking, as I walked home, “maybe I’m fine. Maybe this sickness is going away, and I’m being overly-cautious by passing on social plans for fear of making myself worse.”

The next day was one of the worst symptom days I’ve had in a long time. It felt personal–– like a jab from the universe, saying “you think you’re normal? You think you can do all the things a healthy person can do and not pay for it? You can’t. In case you’d forgotten.”

That night, I laid in bed trying and failing at sleep. I was under the assault of a bone-crushing fatigue that made it impossible to do anything but half-way watch Law & Order reruns and stare at my cat until he got unnerved and turned around.

Tuesday night, me being a normal human at dinner with friends

Sometimes, I have a wise thing to say. A piece of advice. Something I’ve learned from my illness. Something being sick has made me more aware of that I’m thankful for.

Other nights, like that one, or tonight, I don’t. I’m just mad, and sad, and sick. Usually I think I’m making my illness more palatable for the universe by adding a happy spin on the end. “My joints hurt so bad I can’t think–– but it’s fine, I’m really getting to catch up on my reading!” I rarely leave it at “Hey–– I feel like a pile of hot garbage today. That is all.” But I figure sometimes, it’s more honest to leave it at that. And if I truly want people to have awareness of what it’s like to live with a chronic illness, I should be honest, right? Sometimes you have a day that doesn’t end with a bright shiny spin of positivity, and that’s okay, too. Your life is not a PR angle, it’s just your life.

So in the spirit of honesty and not sugarcoating: Hey–– I feel like a pile of hot garbage today. That is all.

I Do Not Have As Many Hours in a Day as Beyonce.

Between #GirlBosses and side hustles and everything else Instagram and Khloe Kardashian is always telling us, it’s pretty clear that productivity is important nowadays.

And generally I think that is great! Encouraging people to do more and be more sounds like nothing but a good thing, right? Except it’s possible that it’s trapping us. Because when you place all your self worth in your productivity rather than your personality, or just your own human goodness, how do we live as people outside of our accomplishments?

Sure, you “have as many hours in a day as Beyonce.” But Beyonce has a trainer, and a team of nannies, and stylists who make her look awesome. Do not judge your personal value by your ability to keep up with Beyonce, please and thank you. You will go insane and spend a lot of money on bodysuits. But more importantly, maybe don’t judge your personal value by your ability to keep up with anyone. Whether it’s a co-worker or a sibling or a mommy blogger whose handmade cakes make you feel subpar, try not to sit around wondering why you can’t get as much done as them, or have their level of success. Everyone’s lives always seem really sunshiney on the outside, but it’s possible that on the inside, that mommy blogger is struggling to keep up just like you. At the very least, her kitchen is probably covered in organic flour.

I think I'm going to start measuring my productivity in delicious teas consumed, books read, and days spent in the park.

So what if we all just cut each other a break? What if we stopped glorifying the hustle? What if we instead started glorifying things like taking care of yourself, writing your sister a letter to make her smile, re-reading your favorite Harry Potter book in the sunshine, or just making it through the day? What if we placed value on the things that made us happy, rather than the things that made us appear outwardly valuable?

I’m guilty of obsessing over productivity. I’ve always liked a list, or something exciting to put on my resume, or just feeling at the end of the day like maybe I somehow was a little closer to my best Beyonce-like life. But being ill has put a lot into perspective, including what a true trap the rat race for productivity can become if you let it take over. I’m not saying we should all lay around and do whatever we want all the time–– the world would stop working and no one would be staffing Burger King to make me Mac and Cheetos. But what I am saying is not to beat yourself up if tonight, all you want to do is drink a glass of wine and watch Veep. The “hustle” will still be there in the morning.

And putting the onus of life on productivity is a dangerous mental trap for the chronically ill. I know that I can’t “do it all,” and that’s okay with me, but when I see people pushing for us all to constantly have some exciting new project or business plan, it’s exhausting. Some days it really is okay if all you did was get out of bed. This is true for everyone, but especially true for those with mental and physical illnesses. Try not to beat yourself up if your disease means that you aren’t “on track” with others. I try to set smaller hurdles of productivity that feel more realistic than taking on the world or getting a book published by next year–– things like meditating (almost) every day, cooking for myself, or organizing my bills.

It’s also important to remember that often, rest is productive. If your body is struggling, ignoring it in favor of powering on will burn you out and leave you in worse shape than before. As hard as it is to feel limited by a disease, it’s even harder to deal with a flare after ignoring signals from your body to slow down. So maybe redefine your notion of productivity: restful activities like coloring, watching a movie that makes you smile, or even taking a nap can be incredibly productive for someone trying to keep their health in check.

I guess what I’m trying to say is that human worth is not measured in productivity–– or at least, it shouldn’t be. It should be measured in things like friendship, and days where you felt genuinely content. It should be measured in how you make people feel, not just checking off boxes of what you think you’re supposed to accomplish. Once you get a team of nannies and assistants and personal shoppers, then you can redefine your productivity to include building an artisanal cheese empire.

Friends With (Medical) Benefits

When you’re chronically ill, it’s easy to get caught up in your own stuff. When you spend most of your days in some level of pain and discomfort, it’s easy to think you’re the only one struggling. But lately I’ve been thinking more about how my struggles with Crohn’s affect the people around me, and the ways caring about a sick person can make you feel kind of helpless.

While having a chronic illness is definitely a huge daily challenge, I can also easily see the challenge that comes from seeing someone you love sick with no light at the end of the tunnel. That’s why I don’t get offended (or at least I try not to) when people ask if I’m better. While I’ve come to terms with the fact that I will never be “better” by traditional standards, I can’t necessarily expect my loved ones to come to that acceptance so quickly.

Luckily I’ve been surrounded by some exceptionally supportive people. My friends and family prove to me every day that even if not everybody “gets it,” I am at the very least blessed with people who care enough to try. I could easily write a novel about the many ways in which these people have helped me, and I hope I tell them enough how appreciative I am of them.

Kelsey (front and center) has been my best friend since I was 10, and she does  things like having her whole PA class wear purple for World IBD Day because she is a better friend than any human deserves.

So for anyone with a chronically ill person in their life, here’s the best advice I can give you on how to be a good friend to a sick person, as evidenced so flawlessly by my wonderful best friends.

Listen up. Honestly, the biggest thing you can do is provide a commiserating ear. One of the biggest issues I deal with in terms of my illness is guilt–– guilt that I’m bothering the people I love with my complaints about my symptoms. But when you’re going through a patch of bad health, new symptoms can seem like they’re popping up every day, and it gets incredibly lonely if you have no one to vent to. Luckily, I have a few friends who I know I can text no matter what with unsolicited complaints such as “My joint pain is making it hard to eat my cereal. Send help.”

Don’t Question Limitations. Listen–– people with chronic illnesses probably already feel guilty about the various accommodations they need. So if they tell you they can’t spend long amounts of time out in the heat, or that they need a certain amount of rest between activities, don’t question them or pressure them to push through.

Be a cheering up squad. People with chronic illnesses often suffer from depression, because having a chronic illness sucks. It isolates you and makes you feel like you aren’t in control of your own body or life. I’m very good at hiding my own bouts of sadness because I don’t want to burden anyone. That being said, it means the world when a friend sees through the facade and realizes I’m in need of some encouragement–– whether that means a care package from my mom or a nice note (I adore snail mail.) My best friend Sarah recently brought me back a stuffed Baymax from Disney World, and I was so freaking touched to have my own personal healthcare companion that I pretty much tear up every time I look at him.

Not only do I have my own Baymax friend, but I have evidence of his adventures at Disney!

Celebrate small victories. For the average person, going on a walk or staying up past 10 isn’t an accomplishment. But for a chronically ill person, these little things can be huge. I recently got the okay from my doctor to taper off my steroids, and my best friend Kelsey has texted me every. single. day. To wish me a happy taper day 5, or 7, or what have you. It means the world to know that someone cares enough to check in, and also that someone else gets how exciting this seemingly small step is for me.

If you’re grossed out, don’t show it. I have Crohn’s disease. Gross stuff happens. A good week for me during this flare involves not having internal bleeding. There are plenty of people in my life that I have to lie to in order to spare them from the unfortunate GI symptoms that are my daily life. You know who I don’t have to do that with? My best friends. If they ask me to hang out and I can’t because of some strategically gross Crohn’s symptoms, I now send them this video and no more questions are asked.

Show up. The amount of friends and family who came out to my CCFA walk was overwhelming and lovely. The amount of friends who have given up a Saturday night to watch movies with me on my couch until I fall asleep at 8 PM is heartwarming. I’m of the opinion that bar-hopping friends come and go, but the people who will hang out with you when you aren’t very fun are forever.

So if you’re the friend or family member of someone with a chronic illness, know that we love you. We love you when you get it, we love you when you don’t exactly get it, and we even love you when pain-induced insomnia makes us cranky jerks. So thanks for being extra kind in a world that needs it. And to my sister–– thanks for the cookies.

It's Crohn's & Colitis Awareness Month!

Here’s something you probably didn’t know: in addition to being a really confusing time for weather in Chicago, May is also Crohn’s and Colitis Awareness Month. If you’ve been reading this blog, you are probably way more aware of Crohn’s disease than the average human, which is amazing. But since it’s the season for awareness, I thought I’d share a bit more detail about these diseases, who they affect, and why being “aware” is actually so important.

Crohn’s and colitis both fall under the larger umbrella of IBD. I know what you’re thinking–– that’s like IBS, right? And logically that leap would make sense, considering they’re so close in nomenclature and they both vaguely relate to GI problems. But IBS and IBD are actually wildly different beasts. IBS, or irritable bowel syndrome, can be painful and a definite disturbance to a patient’s life, but IBD, or inflammatory bowel disease, refers to medically incurable diseases that don’t just alter GI function–– they mess with your immune system as a whole and can cause many more all-encompassing symptoms like debilitating fatigue, eye problems, skin rashes, and arthritis.

Worldwide, over 6 million people have either Crohn’s or colitis. That may sound like a lot, but patients are often hesitant to talk about their disease. Sometimes this is out of embarrassment over symptoms (bathroom habits aren’t really “water cooler at work” kind of conversation starters), and sometimes it’s due to the stigma that being chronically ill carries. Because Crohn’s and colitis are largely “invisible” illnesses, some patients worry about being labeled as lazy or homebodies when they can’t work or go out with friends.

That’s why awareness is so important. I always thought it was kind of silly when someone said they were “raising awareness” about a cause. What do you mean? If we say it out loud enough it’ll be cured? And obviously raising money is what’s most helpful in actually funding research and finding cures for diseases. But in the meantime, raising awareness about those diseases can really improve patients’ quality of life.

Raising awareness means more people know what Crohn’s disease is. It means fewer blank stares when I say I can’t make it to an event because I’m in a flare. It means more genuine understanding when I try to explain my weird dietary restrictions. It means a sympathetic ear to a friend when they’re having a high pain day. It means feeling safe in your workplace because they commiserate with your many doctor appointments. It means feeling better understood and less alone, and it means more empathy all around, which is always a good thing for the world.  

Me and my dad right after walking in the 2013 CCFA Walk

So if you’re feeling compelled to get involved in IBD Awareness Month, here are a few quick and easy things you can do:

1. Reach out to a friend with Crohn’s or Colitis! It doesn’t even have to be me, guys. When you’re chronic illness having, it’s nice to know the people in your life care and are checking in.
2. Put your money where your mouth is! Donate to the Crohn’s & Colitis Foundation of America, which funds awesome research into cures as well as programs to help patients improve their lives. I’m currently in an online support group by the CCFA that wouldn’t be possible without funding. And aside from donating to the foundation directly, you can donate to my walk and all of those funds will go to the CCFA! I’m walking on June 11th in Chicago to raise both money and awareness and I’m super excited to spend the day with my supportive friends and family as well as other Crohn’s patients. It’s always really inspiring.
3. Put your time where your mouth(?) is! If you’re in the Chicagoland area, you can sign up to walk with me and my super awesome team in June. If you’re anywhere else, CCFA probably has a walk near you. Get your sneaks on and do some charitable strolling this summer.
4. Do some charitable consumerism! If you buy one of these t-shirts for $16, a third of the proceeds will go to the CCFA through my walk fundraiser. In addition, you’ll get a t-shirt with some sick Biggie lyrics on it, so win-win? And then when people ask you about your shirt, you can explain the backstory, thus going a step further in the whole “raising awareness” thing. See how easy and fun that is?

   

   
   

So whatever you decide to do, whether it’s as simple as reading this blog and understanding a little more about a disease that affects the daily life of so many people or going as far as spreading awareness yourself, THANK YOU. You are the real MVPs.

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.

On Lena Dunham, Endometriosis, and Feeling Represented.

I had just turned 18 when I was diagnosed with Crohn’s disease. Eighteen is a weird age to be alive on the earth at all, but a particularly weird age to be told you now have a disease that is never going away. The first thing I did when I was diagnosed was inhale five and a half White Castles and a milkshake. Anyone who has ever had to do the prep for a colonoscopy knows–– you are damn hungry afterward. The second thing I did after I was diagnosed was google “celebrities with Crohn’s disease.”

“What a weird thing to do!” You’re probably thinking. But I am a good, practicing millennial, and nothing makes me feel more connected to the world around me than knowing someone with a lot of money and Twitter followers also knows my strife. Sadly, my search yielded very little. Kim Kardashian and Katy Perry are not secretly harboring intense digestive issues (at least not according to internet listicles–– the main authority of life).

So for years, I have had little insight into how a highly successful person and a Crohn’s-disease having person might live within the same body. I didn’t know any people in real life with Crohn’s–– just an occasional anecdote from a friend about how their cousin’s soccer coach has colitis, or something. But then Lena Dunham started getting real about endometriosis in a public setting.

Endometriosis and Crohn’s are totally different things, but they’re also similar in a lot of ways. Sufferers of both experience a lot of pain, have to spend a lot of time hanging out at the doctor trying to figure their insides out, etc. When in a particularly bad flare of endometriosis, it can be difficult for women to go about their daily lives.

So when Lena Dunham (whose work I admire immensely in general) posted on Instagram saying she’d be taking some time off from press for her show “Girls” to deal with her worsening endometriosis symptoms, something inside me felt understood. Here was this powerful young woman, who at an insanely young age has written a book, produced and starred in her own show, and started an awesome feminist newsletter–– and even she is not immune to the pull of her body’s illness. Even she has to know when to say “enough is enough” and just rest.

She also used the aforementioned newsletter to post a really eloquent piece on what it means to be young and chronically ill. I had always loved her for her emotional honesty as a writer, and I know many women identify with her stories of being young and figuring things out–– the “Girls” phenomenon. But to read a story of being young and figuring illness out, to me, felt revolutionary.

So while it may sound silly to need to hear “Celebrities! They’re just like us!” It honestly has helped me cope with my own limitations to see Lena speak so openly about hers. It’s a kind and necessary reminder that being sick doesn’t have to mean I can’t do the things I want to do–– and more so, that even the most successful and seemingly together among us are dealing with things behind the scenes, and taking care of yourself often has to come before everything else. People love that phrase “You have as many hours in a day as Beyonce,” but I kind of think that’s bullshit. We need more successful people out there who don’t keep up the front of always having it perfectly together. So thanks, Lena, for going public with your illness. Thanks for pulling back the Wizard of Oz style curtain and reminding sick girls with their laptops like myself that it’s okay if we don’t accomplish as much in a day as Beyonce–– as long as we take care of ourselves.