I'm Not a Hypochondriac.

I’ve always been a sickly kid.

I had pneumonia 9 times before the age of ten. I grew up using a breathing machine every few months. When I was fourteen, my eyes were mysteriously crossed for three months, to the confoundment of every doctor I visited. For two years in high school I suffered from debilitating chronic migraines. I’ve had pretty much every test and procedure a human can have at this point, from EEGs to CTs to colonoscopies.

And when I was 17, I was diagnosed with Crohn’s.

My time as a professional sick kid started before I could walk or talk

When you’re sick all the time, people tend to want to find simpler explanations. And the simplest explanation of all, it seems, is that it’s all in your head. It’s a lot easier for people to stomach that you want attention, or are just a bit anxious and neurotic, than that a teenage girl is just legitimately ill, and often.

So because of that, and because it seems I’ve been sick with some odd illness or another since before I could talk, the hypochondriac comments have also been a hallmark of my existence. It doesn’t help that as an adult, I’ve also suffered from anxiety and panic disorder. If you’re mentally ill, it’s super easy for everyone from doctors to acquaintances to chock up your physical symptoms to something you’ve made up in your mind.

But here’s the thing–– being chronically ill sucks. It’s physically trying because hey, pain, but it’s also mentally trying for a number of unfun reasons. And one of the biggest reasons? Feeling like you have to prove to people how sick you really are.

When people reach for the hypochondriac thing, it makes patients feel like they have to prove themselves–– and believe me, they can. My illness is “invisible,” but I could show you blood panels that “prove” just how high the inflammation in my body is. Better yet, if I’m feeling particularly sassy, I can show you a picture of the inside of my colon. Because I have it on my phone.

Point being, you should never be making an ill person feel like they have to prove themselves to you. I know it sounds unbelievable that I’m flaring yet again, or that I’ve got another infection. But since I’m the one who has to deal with that physically, instead of opting for emotions like disbelief or skepticism, go for support. Honestly, the best thing a person could give most sick patients is unyielding support and belief.

And when you don’t believe someone who’s sick, you’re probably also making them doubt themselves, which can be bad for their health. Because I had grown up with bad internalized feelings surrounding feeling like a hypochondriac, it took way longer than it should have for me to be diagnosed with Crohn’s. I thought having stomach aches on a daily basis and not being able to eat was somehow a thing I had done to myself. That’s why, while my diagnosis was one of the hardest things I’ve ever dealt with, it was also a relief–– I wasn’t crazy. There was something actually, medically wrong.

While there are always going to be people out there who exaggerate their symptoms for attention or who genuinely are hypochondriacs, the number of those people is much smaller than the number of people actually suffering every single day from random diseases and weird aches and pains. So before you call me a hypochondriac, think about just being a kinder human instead. Unless of course you really want to see the inside of my colon, because we can make that happen, too.

Sisterhood of the Traveling Pajama Pants

A little under a year ago, I was going through the chronic illness thing alone. Aside from twice-yearly gastroenterologist visits where I got my magic pills refilled, I rarely talked about having Crohn’s. Hell, sometimes I even forgot I had it. It was a magical time where I dated and danced and drank and ate nachos like there was no tomorrow.

But right around last Thanksgiving that all started to change. My magic pills stopped working. I was (attempting) to live my best Los Angeles life when my symptoms took on new levels of life-sucking. And then I ended up in a hospital a few miles from the beach wondering how things got so far from the life I’d imagined so damn quickly.

It was a few months later that I began blogging about my experiences with chronic illness. As a writer who was too distracted by my symptoms to think of much else, it seemed like a natural creative outlet for me–– and a great way to avoid ranting my loved ones’ ears off.

In the months since, my symptoms have gotten better, and then way worse, and then better again, and then worse, and then–– you get the idea. Life is a weird roller coaster, my particular ride just happens to involve more pain meds than the average. But the blog part of this crazy ride of life has actually brought me something really beautiful: the online chronic illness community.

Unless you’re a sick kid yourself, you probably aren’t aware that #Crohns and #ChronicIllness are super popular, active hashtags on instagram. #ChronicLife will get you a constant stream of results on Twitter. Facebook is full of private support groups for people with pretty much any kind of illness you can imagine.

I spent the first several years of my disease feeling pretty alone in it–– I didn’t know anyone in real life who had it, and all the articles I read online were full of stuffy medical jargon. Finding the little corner of the internet devoted to real people with the same problems I have has been comforting. If I’m having a bad day, one visit to the #Spoonie hashtag will net me dozens of people to commiserate with. If I’m having a good day, I can spread the positivity and love the same way.

Infusion day selfies are a thing, who knew

So while my last post may be about how the internet is ruining us, I also believe the inverse: the internet has brought me some really nice people who know better than anyone else how much of a celebration it is to taper off of prednisone, or how bad it sucks on days you feel like you don’t own enough heating pads.

And in fact, blogging about my situation has also opened my eyes up to the fact that I was previously mistaken–– I know plenty of people in real life who are dealing with chronic illness. They’re just doing it pretty quietly, the way I used to. I’ve had old middle school classmates reach out, family friends, people I met once at a party. And the thing is, even though we may have nothing else in common, having this one huge thing makes all the difference. It bonds us in a weird sisterhood (or brotherhood, hey dudes) of people who “get it.”

So to my fellow chronic illness-havers, out there, keep on keepin’ on. Keep sharing your stories of how to make Humira shots less painful and what foods you make that don’t rile up your intestines and what exercises are easy on your joints. Keep sharing pictures of you on good days playing with your cute dogs or out for drinks with friends or binging Netflix because you want to, not because you don’t have the energy for anything else.

Thanks for the constant reminder that no one is ever as alone as they might feel, and that the roller coaster has as many ups as it does downs.

***

In a bit of shameless self-promo, the lovely people of the online chronic illness community nominated me for a health activism award. If you feel so inclined, you can vote for me here. Leonardo DiCaprio and cute kittens everywhere will thank you.

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 Economics of Illness

Being sick is expensive. Being chronically sick is extra expensive, because it never ends.

Among the many parts of being sick that I often think about when I’m thinking “damn, this is unfair,” that’s honestly what I think about the most. Being sick is exorbitantly, life-ruining-ly expensive.

There’s the typical costs that everyone probably associates with an illness–– hospital visits, fancy new medications, procedures and CT scans. Thanks to insurance (LITERALLY thanks, Obama) these costs are seriously lowered, but “lowered” from their crazy high initial costs still comes out to “too much money for a 24 year old with student loan debt.” I think that’s the technical total on my last hospital bill.

Those are what we call the direct costs. It’s estimated that the average patient with Crohn’s pays about $18,000 per year in direct costs. Basically, if I didn’t have Crohn’s I could take the money I saved and buy a brand new Volkswagon Jetta every year for the rest of my life. I would love a goddamn Jetta.

Hospital visits ain't cheap, but they are incredibly stylish.

But that’s just direct costs–– this doesn’t include the many other things the chronically ill drop cash on. Here’s a quick rundown of (usually expensive) alternative treatments and things that help ease the pain: essential oils, epsom salts, icy hot patches and creams, heating pads, special health foods, supplements, acupuncture treatments, therapy, etc. Every human with an Instagram these days seems to be trying to sell me a protein shake or a cookbook that will cure me. But the thing is, a lot of times when you’re sick, you’ll try anything that just might make you feel better. And that keeps racking up your costs.

At the end of the day, sick people are dropping fatty cash trying to get to the minimum level of functioning at healthy people wake up with every day.

I plan for my future knowing that while my peers will be making car payments and whittling down their student loans, I’ll be doing all of those things plus trying to pay to keep my Crohn’s at bay. Chronic illness is like having a really shitty extra monthly utility bill that you didn’t ask for, but instead of giving you A/C, it keeps you alive. That’s one of the reasons I’m a politically active person–– it’s easy to think that things like health insurance don’t matter all that much until you’re the one who needs help. It’s easy to think your vote doesn’t matter when you’re healthy, but for people like me, laws like those that make it illegal for companies to discriminate against pre-existing conditions are of phenomenal importance.

Without health insurance, the liquid gold they pump into my veins every 8 weeks costs a cool $20k

If I don’t have insurance, I can’t get my medication. If I can’t get my medication, my body stops tolerating food. If I can’t eat, I can’t live and work and be a functioning member of society.

So when it comes down to it, it’s not just impersonal dollars and cents and figures presented in pretty charts on MSNBC. It’s people like me, working and saving and buying kombucha.

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.

Life is Gross and Then You Die

I watch a lot of romantic comedies.

If Hugh Grant is in it, I’ve seen it. If it involves a funny but sweet montage, I’ve seen it six times. I’m looking forward to the release of Bridget Jones’s Baby the way adult fanboys look forward to the release of a new Star Wars film (which, coincidentally, I am also looking forward to. I can have layers, okay?)

That being said, I’ve seen a lot of (fictional) romances unfold. And I can tell you this–– at no point during the funny but sweet montage does the girl bowl over with a stomach ache. At no point while Colin Firth is eventually professing his undying love does Rene Zellweger have to pause their love story for a poorly timed emergency trip to the bathroom. When Harry and Sally are driving cross-country, they don’t have to make two dozen stops at questionable gas station bathrooms. Anne Hathaway doesn’t keep a travel Pepto Bismol in her purse.

So it’s come as an unpleasant surprise at age 24 to learn that I am not the star of my own romantic comedy. I’m just Sam.

And just Sam has Crohn’s disease, a chronic illness whose main side effects are a lot of gross things that you don’t mention in polite conversation. Chronic illness in general can be isolating, but you know what’s extra isolating? Talking about poop.

Everybody poops. Especially Max. 

I agree with the commercials and campaigns that say “Crohn’s is more than just a bathroom disease.” It is! It’s way more! It’s a host of other things, like extreme abdominal pain like you’ve never felt before, and anemia, and skin rashes, and arthritis, and eye problems, and a lot of other unpleasant things. But it’s also a bathroom thing, day in and day out, and I would be remiss to run a blog about Crohn’s disease and be afraid to talk about shit like this. The literal kind of shit.

So, at the risk of jeopardizing my chances of ever becoming a romantic comedy heroine, here’s the sitch: everybody poops. Even Beyonce, and heads of state. Even the super hot girl who works at your gym. Even your fancy aunt who doesn’t let people eat in the living room. People with Crohn’s happen to do it a lot. So much so, in fact, that I think if you can’t talk about and joke about it, you’d go insane. And since you’re already going to the bathroom like a dozen times a day, you don’t also have time to deal with being institutionalized.

All within the past year, I have done the following: collected my own poop, stored it IN MY FRIDGE next to my Kombucha, and then delivered it to the hospital to be examined. I have drank a gallon of liquid laxative and then had a camera shoved up my ass. I have started bleeding out my ass and then, because I lack tact, referred to it in conversation as my butt period. I have come dangerously close to shitting myself on pretty much every form of public transit in Chicago, and a few in other cities. I have had hemorrhoids. I have had the adult version of diaper rash. I have become intimately familiar with where you can find unlocked public bathrooms.

I’m lucky, because my best friends are disgusting human beings. They can talk about shit all day. They love to be gross. I recently had a cyst burst and they spent an undue amount of time asking me about it’s contents. The universe sent me the perfect human beings to be in my life if I was going to be living as the human iteration of the poop emoji. They never ask questions when we’re on a road trip and I need to pull over. Those are friends you need.

My body does a whole variety of fun and unspeakable things on a pretty much weekly basis. It gets seriously discouraging–– becoming afraid to eat because everything you eat makes you violently ill is not a good look, and it’s a situation I’m in regularly. It also gets seriously dangerous–– dehydration is no joke, folks. But it also gets seriously more manageable if you can joke about it. As with most bad things in life, if you can find a way to laugh at it, you win.

So I’m a little nervous to post this blog, because I’m still secretly hoping Zac Efron is going to come sweep me off my feet, and I’m not sure he (or any guy) is going to be interested in a girl who has told the whole internet about how much toilet paper she goes through. But I’m holding out hope that one day I will be the subject of my own rom com, and the dude won’t care if I have to pause our passionate kiss backed by a romantic overture because my stomach is rumbling in that dangerous way.

I feel like maybe Hugh Grant would understand.

Why Am I Not An Olympian (Or, Ramblings of a Crazy Person)

I found out about Kathleen Baker's Olympic silver medal at 3 AM.

I wasn't awake to watch her take on the 100m backstroke because I'm almost never awake past 9 PM anymore. And that's because Kathleen Baker and I share the same disease.

I found out when I woke up at 3 AM with some nightly steroid-induced insomnia. Because I have wonderful loved ones who are crazy supportive of me and my struggles with Crohn's, I checked my phone to see no fewer than four texts that all said something along the lines of: the girl who just won silver in the backstroke at the olympics has Crohn's!! *american flag emoji*

My first emotion at the news was excitement. Because that's awesome! Damn, good for this girl! I did the world's quickest Google search and saw all the headlines about Kathleen "overcoming her disease" to win an Olympic medal. I work in social media and PR, and it's exactly the awe-inspiring stuff people love to click on.

Now the only emotion I feel is a crazy amount of CONGRATS

But after my cursory glance at Google, I got a little sad and I couldn't put my finger on why. This was a fellow Crohn's patient succeeding in one of the biggest arenas in the world! And then I put voice to the thought that goes through my head whenever I see someone who's chronically ill achieving some crazy feat–– if they can do it, why can't I? What am I doing wrong?

Now let's speed past the logic part that says I'm not doing anything wrong, she just spent her entire life training for the Olympics and I didn't. Duh. The point is, sometimes when a sick person sees an ~inspirational tale~ of another sick person overcoming all odds to win an Oscar, or become an astronaut, or win an Olympic medal, they feel a little beat by their body. It's one thing to say "hey, I probably can't achieve greatness when my body barely wants me to achieve alive-ness." But it's harder to tell yourself that when you see someone surpassing those odds.

So rewind back to my Google anxiety hole–– I'm sitting here, berating myself for not being an Olympic medalist and also for not being healthy enough to do basic stuff like go to bars with my friends. I'm wondering if I'll ever be able to achieve the things I want to in life. Or, in a darker thought, if I'll ever be able to achieve anything of note.

I'm not an Olympian, but sometimes I DO hike a small incline just for the Instagram

But then I did some reading, which is an activity I recommend for anyone who thinks they know everything. I read this great article that not only made me cry–– it pointed out all the sacrifices Kathleen has had to make because of her Crohn's. You see, in my mind she was a super human, laughing at all of us mere mortals who were stuck in bed thanks to our symptoms. Now I know she's just like me–– I focus all of my energy on holding down my job, and doing the best work there that I can possibly do. She does the same thing, it just so happens that her job is being a badass freaking Olympian. 

It's a great reminder that when you're sick, you can still accomplish (almost) anything–– but you can't accomplish everything. I can write for a living, I just may not be able to like, run my own production company where I oversee 15 hit shows (like a certain Shonda Rhimes). Kathleen can swim in the Olympics, she just may not be able to compete in every single event she might like to. Maybe there's an alternate world out there where Crohn's doesn't exist and I'm the next Mindy Kaling and Kathleen has 25 gold medals.

But in this world, we're working with what we've got. And I think we're doing a pretty bang up job.

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.

Love, Butterflies, and Ginger Ale.

There are certain things in life you don’t appreciate fully when you’re young. Like taking naps, or having a spring break. Or your relationship with your grandparents.

I was very close to my Gramma as a little kid–– she babysat us often, and I remember doing puzzles with her, or taking the bus to the mall (she never, ever drove), or watching soaps in her living room. I remember playing rummy with cards that had baby zoo animals on them, and that she always had snacks we liked at her apartment. I remember that she had a popcorn ceiling–– something I didn’t have a name for until many years later, but that I always just associated with Gramma’s house.

She liked butterflies, and anything made of pewter, and reading, and she really loved Taco Bell, which in retrospect is hilarious for its incongruity. And she was sick, pretty much always. Not in the alarming way most people’s grandparents are sick, where it signifies that death is coming–– the chronic kind, where most of my childhood was spent in the back of my mom’s van, chatting with her while we drove her to doctor’s appointments.

I was young when she developed dementia, and while she technically lived well into my college years, all of my viscerally happy memories of her are squeezed into my childhood. I was diagnosed with Crohn’s disease when I was 17, long after her mind was already fairly out of sorts. And now, at 24, when a flare has taken me into the territory of truly, chronically sick person, I find myself missing the relationship we could have had now that I am an adult.

When you’re sick, you seek out people who might best understand. It’s not anyone’s fault if they can’t understand–– in fact, it’s great news for your loved ones if they can’t fully understand. It means they’re healthy, which is all I want for the people in my life. But sometimes, when symptoms are bad and you need a commiserating ear, another chronically ill person is the best possible option. Especially when that person is family.

I know if my Gramma were around, we could sit around and watch TV, and I wouldn’t feel bad at all bitching to her about how my steroid taper is making my hips hurt so bad that I can’t sleep. She would probably tell me about her own joint pain, and messed up sleep schedule, and how getting from point A to point B leaves her winded. We would probably make a joke of it and drink some ginger ale and then she’d force me to take home a stuffed animal she had in her apartment.

But even though she’s not around, I feel like I can learn about living with sickness from her even in retrospect. While she definitely didn’t live life mistake-free, she did a lot of things I can take away for myself. She threw her energy into loving her grandkids. She made us feel special when I’m sure she wasn’t feeling that way herself. She read a lot, and tried to keep her mind up even when it was fighting against her–– the nurses in her assisted living facility had to repeatedly clean out her room because she was hoarding books, a fact about her last years that I love a lot.

So on days like today–– her birthday–– I will get my own struggles together and take away the things she would have wanted me to. And I will also drink a ginger ale in her honor.

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.