Books Are Uniquely Portable Magic

I love to read. Always have. When I was little, this meant some friendly teasing about the irony my last name from some kids who were too young to understand irony. As an adult, it’s meant an English degree and a shelf full of “to-reads” I can never quite catch up to before buying even more.

It always baffled me, in fact, that there were people out there who didn’t like to read. What was there to not like about picking up a book and being somewhere else for an hour? Whether it was escaping my own problems through someone else’s or feeling understood, there was nothing like a book.

As an adult, it’s gotten a little harder to find time to read for fun. In college I was constantly reading because I was an English major–– it’s kind of part of the territory–– but now as someone with a full time job, my books to-read were gathering dust on the shelf. I was hitting up the easy reads like memoirs, and doing so at a snail’s pace. And I didn’t feel like myself because of it.

Some favorite Christmas gift selections

Fast forward to early February–– I got sick, really sick, and fast. I went from dancing my face off on my 24th birthday to fainting from pain in the backseat Uber on my way home from work in 2 days flat. Since then, I’ve been in a pretty aggressive flare that has knocked my body (and more importantly, my social life) on its ass. These days, I don’t happy hour–– I try to stay awake through a work day and then have a happy hour with me, my couch, and no fewer than two heating pads.

So that all sounds no fun, right? Except I’ve been conditioned to be ever the optimist, so I was recently thinking about the good things this flare has brought me. I eat healthier. I prioritize my health more. I actually communicate with my doctors. I keep my mental health in check better than ever before. And most fun of all? I’m reading again.

Reading is a phenomenal hobby for anyone with chronic illness. It’s cheap (hey, libraries), it’s easy, and it’s a great way to entertain yourself. I live with a roommate, but a lot of times when I have to stay in on a Friday night thanks to my symptoms, it’s just me and my emotionally withholding cats. And there’s only so much Netflixing a person can feasibly do–– believe me. But books provide an outlet that’s unlike anything else, where I can completely forget about my own circumstances or whatever is bothering me and just engross myself in a good story.

This is my current favorite place to read–– the park across the street from my apartment.

Also, as a person with chronic illness, I spend a lot of time waiting. Waiting for prescriptions, waiting for doctors, waiting for infusions to be done. And I know that we all have the internet in the palm of our hands these days, and I’m as addicted to Twitter as the next girl. But I do think there’s something great about having a book waiting in your bag for moments like that. A good story never fails to calm me down when I’m waiting to get bloodwork done or tackle an annoying new CT scan. I would even go as far as saying “How To Build A Girl” made the barium I had to drink last month taste bearable. It’s true what they say about books being portable magic.

So in terms of silver linings to seemingly unfortunate situations like bad health, I’ll definitely take more time to read. As a smart teacher once told me, “we can only write in words we know.” Reading not only gives me an escape and a way to spend my sick time–– it makes me better able to express myself. And when you’re living life on intermittent bed rest, helping others understand becomes paramount.

So to books I say: thank you for being the most constant and reliable companion I’ve ever had.

How I Learned To Embrace My Inner Introvert

I always thought I was an extrovert.

In retrospect, I always tried to be an extrovert, because I thought that was the correct way to be. Who doesn’t want to be the life of the party? Introvert, for some reason, had negative connotations to me. Shy. Unapproachable. Anti-social. All things that I was taught from an early age were disadvantageous to be. So I made myself loud and boisterous–– the center of attention. It took me way, way too long to realize that in almost every situation where I was forcing myself into that role, I was wildly uncomfortable.

As I’ve gotten older, I developed pretty bad anxiety. It had to do with a lot of things–– my brain chemistry, some pretty long-ingrained perfectionism, and my Crohn’s diagnosis, to name a few. But it was far too hard with my rising anxiety to pretend to be the most outgoing one in the room all the time. This was both a blessing and a curse: I was self-conscious that others would view my new “personality shift” as weird, but I also felt so much more comfortable in a middle ground.

Me in my natural habitat: at home with blankets.

Don’t get me wrong, I still enjoy attention as much as your next narcissistic writer. But as I’ve grown into myself as an adult (especially an adult with a chronic illness), I’ve enjoyed shifting that attention to a more behind-the-scenes approach. Rather than needing to be the one yelling out a funny story at a party, I’m content to express myself through writing. Instead of forcing myself on stage, I wrote a web series and cast some friends as the leads. It’s been all about finding a happy medium. I still love to talk and meet new people, but I’ve realized I don’t need to force myself to command a room.

But then my illness got worse, and things got a bit more extreme.

For someone like myself who’s often been self-conscious about my introvertedness, being forced to stay in due to illness can really get my anxiety going. My thoughts can go from zero to doom-spiral in 60 seconds flat: do people think I’m just rude? Anti-social? God forbid, boring? And when people say things like “I’m so jealous, I would love to lay in bed all day!” Or, “You went to bed how early? That sounds great!” It can make those anxious thoughts even worse. Even though, as an introvert, I love staying in every once in awhile, staying in because of my illness isn’t a choice I’m making–– and believe me, most Friday nights, I’d way rather be doing anything but going to bed at 8.

But thanks to some nice friends and paid professionals, when that doom-spiral comes a-knocking, I remind myself of one simple fact: people don’t think about you nearly as much as you think they do.

One of the best people to stay in and build a gingerbread house in matching onesies with.

The attention-loving part of me has a pretty intense imaginary audience complex, as we all do to an extent, that believes that when I miss a party or a night out at the bar, everyone is sitting around wondering (and discussing) why. In reality, when I miss a night out at the bar, most of my friends wish me well thoughts and then go down a few tequila shots and make some bad decisions. For good or bad, I am not the crux of their thoughts for the evening.

The shitty thing about anxiety is that it’s not also simple enough as remembering logical thoughts like that, because anxiety is, by nature, illogical. But it has helped to remember that the real friends I have are never going to bail because I stay in on a Friday night. In fact, some of them might join me. With puzzles. And ginger ale. And season five of “Scandal.”

"I'm totally fine, guys!" Or, On Being Chronically Ill But Also a People Pleaser.

I can be a real people pleaser, especially to people I don’t know very well.

Maybe it’s the way I was raised (as a child, my dad once threw up in his teacher’s car and then tried to hide it, as not to make any waves). Maybe it’s the overly hospitable Midwesterner in me. Maybe it’s that thing that seems sadly ingrained in a lot of women where we just never want to be *gasp!* a bother.

Whatever it is, I have a deep seated need to never make anyone uncomfortable. I will go to great lengths to keep this up–– I didn’t hear what you said? I’ll nod and smile and pretend I did! You want to buy me a drink but I think you’re a creep? I’ll probably let you and then just hope you go away! You want me to buy the weird teflon nail polish you’re currently selling through your aunt’s friend? Put me down for 16 bottles.

People pleasing runs in the family, as does a love of Mt. Vernon and wearing stripes.

In life, this just makes things occasionally awkward and weird for me. But in terms of my illness, it can actually cause some problems.

As it turns out, when a doctor or other medical professional asks how you’re doing, you’re supposed to actually tell them. Wacky, I know. The standard, “Oh I’m great, how are you doing?” is slightly less convincing from an emergency room stretcher. And being coy about your symptoms can really hurt you. If your doctors don’t know what’s wrong, or how much pain you’re actually in, it’s hard for them to treat you.

A standby response for me at gastroenterologist appointments for years was “mostly I feel normal.” Each time, their response was the same: my definition of normal is not the same as a healthy person’s definition of normal, and I could be doing better. But how do you redefine normal? Normal for me has been a steady homeostasis of stomach aches and discomfort. So how do I put myself in the shoes of a healthy person, and then describe what I feel from there? What’s it like to not be in at least middling amounts of pain every day?

Add on to those questions that I have been blessed with some pretty crippling social anxiety–– I’m constantly worried about what other people are thinking of me. If I’m having a bad pain day, and I tell you as much, is that going to be seen as dramatic or attention seeking? Everyone worries about what others think to some extent–– but I’m actively trying to take doctors out of that equation. If there’s one person with whom you should be being totally honest about your symptoms, it’s them. Your doctor is not someone you are trying to impress at a party, they’re there to gather information and help you feel better. (Unless, like me, one day you get a really attractive young GI fellow asking about your bowel habits. In that case you should giggle a lot and stop forming words, like I did.)

The moral of the story is, people pleasing isn’t all bad. Except when it puts your health in jeopardy. Or when it lands you at a really lame acquaintance’s baby shower because you don’t know how to say no.

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?

I Used To Go Hard and Now I Just Go Home

In the words of classic philosopher Beyonce Knowles…. “‘I’ve been drinking.”

And boy, have I ever. When you’re 24 and living in a big city with a bunch of your best friends, going out isn’t really part of the territory–– it is the territory. I have friends that work in bars. I have a workplace with a keg. Happy hours and boozy brunches are really standard plans, and it’s still very common to just meet at a bar with no intention for the night aside from drinking.

And yet–– I’m currently in a health-induced no-drinking zone.

It’s not a hard and fast rule my doctors demanded, but in a world where I can’t eat chicken because it irritates my stomach too much, giving up alcohol indefinitely was a (disappointing) no-brainer. And I honestly don’t mind all that much–– giving up cheeseburgers was a hell of a lot harder, personally. But it does put kind of a crimp in all of those aforementioned social plans when I can’t partake in the part that puts the “happy” in happy hour.

From a drink with dinner to... whatever this is.

It’s not that I can’t have fun without alcohol. Duh, Netflix exists. There are puppies in the world. And funny movies. I can eat cake, and dance badly to Taylor Swift songs. There are a million ways to have fun without drinking. But when you’re a certain age, being sober can make you the odd one out in social scenarios. And explaining why you aren’t drinking can get a bit exhausting as well. Ordering a ginger ale at a bar isn’t exactly the most normal and innocuous thing to do, and while people are always super chill about it when I say I can’t drink, it’s still a conversation to be had.

When I first realized I would have to stop drinking indefinitely, I assured all of my friends that nothing would change. I would still go out to bars with them until 2 AM–– don’t worry! But I’ve realized, thanks to the additional impact of fatigue, that I actually can’t just continue on my social life as normally scheduled minus the gin and juice. So what do you do when your body is conspiring against your ability to have a good time?

You make some changes. You start suggesting evening and daytime hangouts, where you’re more likely to have some energy and alcohol isn’t always an assumed part of the socialization like it can be on a Saturday night. My body pretty much powers off at 9 PM these days, making it hard to make it out at all–– let alone stay out. But you know what I realized? Going out to bars isn’t the only way to see friends, or meet people, or have a good time.

My life now is just like this, if you replace the vodka sodas with Ensure.

I’ve started having friends over for dinner. I’ve taken up (booze free) brunch like it’s an olympic event. I’ve perused locally owned bookstores with my mom, and gone for facials with my best friend. I’ve learned to have fun with a trip to the grocery store or a solid morning yoga session. As it turns out, life exists before 9 PM, and it’s actually really nice. And waking up not hungover on a Sunday morning is a revelation. Last weekend I baked muffins. I barely recognize myself.

Point being, if alcohol is harming your health for whatever reason, giving it up doesn’t have to be a death sentence for your social life. There are plenty of activities (like music events, comedy shows, etc) that might be a little more fun a few beers in, but are just as valid and entertaining as the sober one in the room. And it might sound cliche, but it’s true: if I surround myself with the right people, I really don’t need to be drunk to laugh my face off or dance to Beyonce. It comes naturally.

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.