Saturday, December 30, 2017

STYA has moved!

Hi team -

If you find yourself on this page, please re-navigate to the new and improved It features a more aesthetically-pleasing design and lots of new content.

Thanks for reading, and I hope you'll come along to a new home and new domain with me!

Sunday, October 8, 2017

Mental Health and Physical Health: A Dysfunctional Relationship

According to the Cleveland Clinic, one third of patients with a chronic illness experience symptoms of depression.

While that statistic is jarring in its magnitude, it's not really all that surprising. I talk a lot about what life is like with a chronic condition, but I rarely talk about the mental repercussions of my diagnosis. That's probably because depression, anxiety, and other mental health issues still pack a major stigma –– and because I tend to cope with the bad stuff in my life by cracking jokes about them. But considering that one third of the patients that may read this blog are also struggling with depression, it seems negligent of me to not address it.

I started going to therapy when I was nineteen. I had recently started having panic attacks several times a week and feeling too depressed to leave my apartment. I assumed it had something to do with the transition from high school to college, but it didn't take long for my therapist to pick up on the fact that my descent into depression coincided almost exactly with my diagnosis.

The idea that being diagnosed with Crohn's would have such a major effect on my mental health didn't make sense to me at first –– I was on medication and doing pretty well, physically. But the thing is, even when your symptoms are under control, the overarching idea of what chronic illness is can be a lot for anyone to handle. Being told a few days after turning eighteen that I was sick and I was never going to not be sick again, took a big toll.

The feeling of hearing that news is difficult to describe, but I once saw it fairly succintly covered by one of my favorite authors, Jeffrey Eugenides, in his book The Marriage Plot:
It seemed especially cruel then, three days later, in the hospital when the doctor came into the room to tell Leonard that he suffered from something that would never go away, something that could only be "managed," as if managing, for an eighteen-year-old looking out on life, could be any life at all.
I know now that I have been able to create a whole, good life in spite of my illness. But since a hallmark of depression is negative thinking, it's sometimes easy, when I'm going through a bout of depressed feelings, to forget about the good stuff. I focus instead on how unfair it all is. I focus on the limitations being sick has set upon my life. I think about how different things could've been. I think about how even though I'm fairly healthy right now that I know from personal experience that it can all be taken away tomorrow by a new flare. Having these thoughts can't be solved by just "being more positive." For people with depression, it's more complicated than that.

In 2016 I went through a year-long flare, much of which I chronicled here. Looking back, it feels like I missed a year of my life. I didn't get to date, or make new friends, or do any of the other things a 20-something should be doing. And while my disease is mostly managed right now, I know it could go back to that –– the steroids and the pain and the isolation –– at any time. Because that's how chronic illness works. It's peaks and valleys, but you can't necessarily know when a dip is on the horizon.
Taken on a rare trip during my "lost year" of 2016
Depression works very similarly. Saying I have depression does not mean I am depressed at all times. Like my Crohn's flares, sometimes I feel perfectly fine. Sometimes I feel happy. Other times, the symptoms of depression crop up and I have to deal with them. The best thing that ever happened to me in relation to my mental health issues was accepting them –– I stopped fighting and denying them, stopped blaming myself, and started seeking help.

I've been on anti-depressants and anti-anxiety medication on and off over the course of my illness. I've been in therapy for most of that time. I've learned to better express to friends and family how they can help. I've started taking better care of my mind and body so that I'm better able to fight off negative thinking when it starts to take over.

What I'm getting at is that if you're physically sick, it's exceedingly normal to develop mental illness symptoms as well. You are not alone, and you are not to blame. But just because it's normal doesn't mean you can't treat it and try to create a life with more peaks and fewer valleys. Like any other symptoms of chronic illness, there are steps you can take. There are medications. There are therapists who specialize in talking about illness. There are support groups and friends to talk to and books to read and meditations to do. It all might sound a little hokey, but it really helps.


If you're feeling depressed, you can find some awesome resources through the National Institute for Mental Health.

Tuesday, September 19, 2017

Chronic Illness –– It Could Happen to You!

Lupus. Multiple Sclerosis. Endometriosis. Crohn's Disease. Rheumatoid arthritis.

All of these are just a handful examples of debilitating chronic illnesses with unknown causes. Doctors believe some mix of genetics and environment and about a million other things could be the culprit, but the point is: we don't know.

And when you don't know what causes a disease, it's nearly impossible to prevent getting or having it. There's no cure for a large percentage of chronic illnesses. No amount of healthy eating or positive thinking or only buying organic shampoo can prevent you from getting these diseases. Some people will have them, and some people won't, and until we can determine direct causation, there's no way of knowing who will draw the lucky card that says "totally healthy" and who will draw the card that says "chronically ill." Healthy people have not done something "better" or more virtuous than people with these conditions –– they've simply gotten luckier in the lottery that is life.

And being healthy is not a static state. I thought I was healthy, too, until I wasn't. There are young, seemingly healthy people every day who are suddenly developing terrifying symptoms and being diagnosed with these illnesses. Being healthy up to this point in your life does not make you immune to falling ill tomorrow, or next week, or when you're fifty.

Is all of this scaring you? That's kind of my point. Because I need you to do something, and fear is a powerful motivator! I need you to call your senator and ask them to vote "no" on Graham-Cassidy. For the uninitiated, Graham-Cassidy is yet another bill the GOP has introduced to try to take healthcare away from millions of people –– 32 million, to be exact.

Everyone should be afraid of this bill. They nearly have the votes to pass it, and the ramifications of said passage would be felt in nearly every household in this country. Pregnancy could put you in financial ruin based on the essential health benefits that could be taken away by Graham-Cassidy. The implications for people with the chronic illnesses I listed above would be devastating. People will go bankrupt, and people will die, and that is not an exaggeration.

I know that in these political times, it's hard to muster the energy to care about every insane bill that comes across your Twitter feed, or to feel outrage at Trump's latest horrifying statement. It's easy for me to fight against this because I literally have to –– my life, as a chronic illness patient, depends on it. But what motivation do you have?
This is me with all kinds of people who love me and want to cure my disease. We're fun motivation to make your calls!
I can be your motivation. Your mom with diabetes or your uncle with cancer can be your motivation. Your dreams of one day having children can be your motivation. Or, this simple and succinct tweet from Connecticut Senator Chris Murphy can be your motivation:
"Years from now, when your child is denied health care bc of his illness and you are facing bankruptcy, you'll regret being silent this week."
This blog is often about how you can help people with chronic illnesses live better lives. Today, this blog is about how you can help yourself. Do something today that your future, potentially less healthy self with thank you for and make a two-minute phone call that could literally save lives. When else are you going to have that kind of power with that little effort?

And as an added bonus: if you have friends in Maine, Alaska, Arizona, Kentucky, Louisiana, Wisconsin, Nevada, Ohio, and Kansas –– forward this post to them, please! They have senators that are still on the fence about the bill who could make or break access to healthcare. Want to do even more? This is a great resource for local events.

Thank you for listening to my story, thank you for calling, and thank you from your future self who would really like to be able to pay for his blood pressure medication and also send his kid to college.

Thursday, August 31, 2017

Back to School Special: What Educators Need to Know About IBD

Fun fact: before I worked in my current job in social media marketing, I entertained the idea of being a high school teacher. I “entertained” it so hard that I minored in secondary education, finishing all my courses and observation hours in a high school.

I opted for a different, more Twitter-centric path in the end, but I remember my classes well. I remember learning about how to help kids who have learning disabilities, and how to cater to different types of learning styles. What I don’t remember them mentioning much (if at all) is how to deal with kids who are chronically ill.

This isn’t an indictment of my education –– there are a million and one diseases out there, and it would be awfully hard to teach you what to do in all million and one instances during one college career. But if you’re a teacher, and you have a student with IBD, there are some things you need to know. And since your students might not have the tools to tell you how they’re feeling due to embarrassment, or nerves, or whatever else, I’m here to do the telling for them.

High school: a time for weird haircuts, hating Geometry, and life-altering medical diagnoses
Don’t make them prove that they’re sick
I understand that when working with kids, you have to be tough or they might try to pull one over on you. But when you have a student with IBD who is telling you they can’t participate in gym class, or they need to go to the bathroom fifteen times a day, they aren’t just trying to find excuses to get out of class. Questioning a kid with Crohn’s or Colitis on whether or not they really need to leave class again can make them feel like they have to hide their symptoms, which can make them a lot sicker. Believe them, believe them, believe them.

Work with them and their parents
A hallmark of being sick as a kid or teen? Missing a lot of school. Whether it’s a flare or a hospitalization or just a bad symptom day, your students with IBD are absolutely going to miss school sometimes. They’re going to do it a lot more than your traditionally healthy students. Work with the student, their family, and the administrators to help them catch up, and don’t make them feel like they’re being punished for being sick. Being sick is already a pretty hefty punishment. (And don’t even get me started on the ableism that is “perfect attendance awards.”)

Provide accommodations
A lot of schools don’t allow you to get up and use the restrooms during a test, but IBD students need special accommodations that allow them to do that. Some schools have policies that delineate how many classes you can miss before automatically failing –– IBD patients need accommodations for that, too. Many schools don’t allow you to have snacks in the classroom, but some IBD patients are on diets where they need several small meals a day rather than three large ones. Whatever the case may be, encourage the student and their parents to work out a 504 plan with the school. You can find a handy template for one here.

Be there for them
IBD can be a socially isolating disease. Kids (and adults, too, for that matter) often don’t want to talk about it because they’re embarrassed or afraid of judgement. For that reason, students may not have a ton of advocates at school –– but you can be that advocate. Try to make sure your students know they can come to you if they’re feeling overwhelmed balancing the spinning plates that are school and a chronic illness. They may not have a big circle of supportive peers to turn to, but they can have you.

Each individual student’s situation is going to differ, but it’s important to be aware of their needs going into this school year and forever. Crohn’s and Colitis are very mentally taxing diseases (there’s a significant association between having IBD and having anxiety and depression), and feeling stressed by not having advocates at school can make both the physical and mental symptoms worse. But a little education can go a long way! Whatever illness your student is suffering from, do a little reading up on it, and remember that chronically ill kids are a vulnerable population that need great teachers more than ever.

Tuesday, August 8, 2017

Sick and Tired, But Mostly Tired.

I've been fully living lately.

After a year and a half of extreme sickness –– spending all my free time in bed, not being able to eat, and pretty much never socializing –– my biologics finally kicked in this year, and I kicked back into the high gear of a "normal girl."

One problem?

I'm not a normal girl.

Don't take that the wrong way here –– I know my illness doesn't define me as a person, but it is definitely a big facet of who I am. Even when I'm going through a healthy phase, it's relative. I'm healthy by my standards, not the standards of a 25 year old woman without a chronic illness.

I've done a lot recently that I couldn't do at this time last year. I put on a hard hat and built a house with Habitat for Humanity. I drank the day away at the beach with my best friends on the 4th of July. I biked 20 miles with my co-workers. I traveled solo to London. I climbed a rock wall. I stayed out all night.
I got to spend this 4th of July on the beach with friends instead of in bed, and it was boozy and glorious.
Most recently, I went to Boston for the weekend with my family. It was a great trip, but it confirmed what I've been noticing over the last few months of a constant busy schedule –– that I can't do it all, all the time. That the underlying exhaustion that comes with a chronic illness means that I don't necessarily have the same stamina my friends and family have. That I can definitely go sightseeing and eat at great restaurants and cheer on my (White) Sox at Fenway Park, I am going to need to take a break after. I'm going to need to listen when my body says to slow the hell down.

I've noticed that even at my healthiest, if I do too much for too many days in a row, I crash. I get sicker. My body aches, and I get hit with a fatigue so bad I can't keep my eyes open. I was recently at a music festival (after 3 days of solidly booked, crazy plans), and I got so tired I felt like I had been drugged, and nearly passed out. Guess what? It wasn't drugs –– it was a week of being way too busy in a body that doesn't support that kind of schedule. That's how extreme exhaustion can feel for people with autoimmune diseases. We don't just want a break–– sometimes we physically need one.

Me and my very understanding sister at Boston Harbor - she gets me snacks and air conditioning when I feel faint, and never guilts a nap. These are people you need.
The term "exhaustion" gets a bad rap because sometimes celebrity rehabs use it as a euphemism, but for the sick, we know it's a real thing. And we know how quickly it can hit. And we know it doesn't care about our well-laid plans.

I spent the last night of our Boston trip posted up in a pull out bed at the hotel, room service in my lap and Wedding Crashers on the TV while my family went on a boat cruise. It wasn't the most glamorous bookend to a vacation, but it was what I needed. And that's what I'm trying to get at here –– not that chronically ill folks like myself can't do all the fun things we want, but that we have to be more aware of keeping a balance. That we have to listen to our bodies, and not let "healthy people" make us feel like we're not keeping up. That we may have to prioritize a little bit differently.

So if you've got a chronically ill loved one in your life, check in on them. Make sure they aren't overbooking to keep up with their healthy friends. Make sure they're taking breaks, and that they know that in your company, they should never be embarrassed to say it's time to rest.

And if you're the ill person in question, know your limits and don't be afraid to enforce them. People who don't understand the value of rest are missing out on a lot of great TV movies, anyway.

Tuesday, May 23, 2017

Independent Women, Pt. III

There are a lot of "hard parts" to being chronically ill. The kick to your finances is difficult to manage. The blow to your social life is mentally trying. Hell, physical pain is no picnic, either. (Mainly, though, I miss the ability to eat movie theater popcorn with a heart attack amount of butter.)

But one of the hardest parts for a lot of patients is the way being chronically ill can strip you of your independence.

I have always prided myself on being an independent person –– living on my own, taking care of myself, paying my own bills. Going to college where I didn't know anyone and once even attempting to move cross-country without so much as a friend. Not needing another person to take care of me has always seemed of paramount importance. That Destiny's Child wisdom really stuck with me, I guess. Whether that translates to being a strong, independent woman who don't need no man or just being a grown-up who doesn't need mom and dad footing the bill anymore, independence –– both emotionally and financially –– was always top goal for me.

I hear my healthy friends talking all the time about what adventure they'll go on next. How they'll quit their job to do some long term traveling, or what city they'll move to for their next chapter of adulting. There's a saying that goes "Health is a crown that the healthy wear, but only the sick can see it." The things that healthy folks take for granted –– like being able to pick up and go at any time –– are aspects of independence that sick people just don't have. And we see it. And we wish we had it. And we're jealous, even though jealous isn't always the coolest thing to admit to being.

While it's not impossible to do those adventurous things with a chronic illness, it's a hell of a lot harder. When you see just how bad your illness can get, and just how quickly your health can be taken from you, with little to no warning, you lose a little bit of that boldness. Traveling for a year turns into, "Well how will I get my monthly infusions when I'm in Laos?" And picking up to move to a new city where you don't know a soul goes from romantic and wanderlust-y to, " Who's going to be my emergency contact when I end up in the ER again?"

One of the biggest life-changers I've had to come to terms with since getting really sick is that I need help. Even when I don't want to need help. Sometimes I need my mom to drive me home from a colonoscopy, because they don't just let you hop on the CTA when you're fresh off anesthesia. Sometimes I need my best friend to drive me to the grocery store when a flare is severely fucking with my joints. Everybody needs somebody, sometimes, right?

When I was brand new to LA and barely knew a soul, I ended up in the hospital and supremely lucked out –– my dad just happened to be visiting that weekend.
And while needing people from time to time is a universal sentiment, chronically ill or not, it does make me occasionally mourn the badass life I might be living if I didn't need people in such a literal, immediate, and physically present sense. If I just needed emotional support from friends rather than literal caregivers. Maybe I would go teach English in South America for a year! Maybe I could risk a lapse in health insurance long enough to go be an unemployed, surfer-vagabond-guy in Australia for a bit! But as reality would have it I am here in Chicago, about an hour away from my childhood home, and trying to find other ways to assert that independence.

If chronic illness does anything, it makes you think outside the box.

It's okay to mourn the life you might've had. It's also okay to accept the life you do have. And I know in my soul I'm the same independent, adventurous girl I've always been –– now I just need to schedule those adventures around treatments.

Friday, May 12, 2017

May is IBD Awareness Month! (2017 Edition)

Happy IBD Awareness Month!

Or maybe “happy” seems like a slightly-off way to put it, as we would all be much happier if diseases such as these did not exist and we therefore did not have to be aware of them.

It is IBD Awareness Month!


Awareness months are a little weird, because you’re like 1 - why do I need to be aware of this? There are so many things to be aware of. And 2 - How do I help and become more aware? I’m busy and I have like three episodes of The Handmaid’s Tale to watch later.

Last year walk day was like 102 degrees and we still has a bunch of fun and braided each others' hair and ate tiny hummus packets
Luckily, I’m here to answer both! I operate on the belief that empathy is pretty much the most important quality that exists in the world. Without empathy for others we would all just run around doing whatever we want all the time and we’d be living in an IRL version of The Purge. Lack of empathy is how you get people like Paul Ryan existing out in the world.

And, to put it simply, awareness helps build empathy. You may have heard of a disease like Crohn’s disease in passing, or from one of those terrible commercials, but chronic diseases become a hell of a lot more real when you know someone who is affected and that person tells you their story. That’s why I’m here doing this whole thing –– sharing is hard, but if it helps educate people and bring a little bit more empathy into the world, I’m so incredibly down to take one for the team and share like crazy.

And now on to part 2 - how do you help? Well, if you’re a genius prodigy child, get to work on developing a cure, please. If you’re literally anyone else, I’m here to outline a few quick and easy ways you can help the cause. They will take like 5 minutes of your time, and you will feel good about having helped someone(s)! Like the nice warm feeling you get when you don’t let the elevator doors close on a stranger.

Action 1 - Talk to a patient
IBD affects a truly wacky number of people, but a lot of them don’t feel incredibly comfortable bringing it up in everyday conversation. Odds are you know someone with IBD, whether you realize you do or not. If you do, a quick, easy, and free way to observe the month is to reach out to that person and say hey. Ask about their health, their life, their new favorite binge watch. Chronic illness can be incredibly isolating, and having people out there who you know care about you goes miles in helping.

Action 2 - Buy a shirt!
Here comes some shameless self promotion, because I am who I am. From now until May 17th I’m running a t-shirt fundraiser with 50% of the proceeds being donated to my walk team, which directly benefits the CCFA. It’s a win-win for everyone because shirts are only $12, and you get to wear a badass design from a local artist while also helping colons. Click here to do the damn thing.

Action 3 - Wear purple on May 19th!
This is both easy and fun, because it doubles as your monthly memorial to Prince. May 19th is IBD Awareness Day, aka the pinnacle of the whole awareness month. Purple is the signifying color of choice, and if you wear it on May 19th and tag me in a selfie of you in your purple, I’ll donate a dollar to CCFA. And then you can walk around all day being like, “I’m wearing this color for charity,” and your friends and co-workers will be forced to acknowledge that you are good and kind. Last year 40 people (and a few dogs!) participated.

Action 4 - Walk with me! (Or just send money!)
For a lot of patients (especially kids), the annual Crohn’s & Colitis walk is an event they look forward to all year. It’s got a super fun field day type vibe that reminds me of the happiest days of elementary school, and it brings patients and their loved ones together in a celebratory fashion that isn’t all about being sick. If you’re in Chicago on June 10th you can come walk with me and my friends and make ill-timed intestines jokes with us. If you can’t make it, send me your pocket change! I’m a competitive fundraiser and .83 cents of every dollar donated goes directly to really awesome things like researching much-needed cures and putting on events that increase patient quality of life.

The fact that you’re here, reading my blog, probably means you’re already way more aware than the average bear (or American voter.) Pat yourself on the back, buy yourself something pretty, and then do one of the things on this list. Me and my colon thank you.