I’m coming up on three years since my diagnosis, and while I’ve written about so many of my experiences and conversed privately with a lot of you, I realized that I’d never opened my blog up to questions. A few weeks ago during Crohn’s and Colitis Awareness Week I asked you to send me your questions for a special Q&A blog that I promptly ignored and never got around to because of Christmas and Vacation. Well guess what! I’m back, in 2017, to do the bare minimum of what I promised you a month ago!!! (srry ily thank u for the support)
1katieharrison asks: How did you build up enough courage to begin posting about your Crohn’s, as it is a very personal topic?
Well, Katie, I am the exhausting type of person who loves talking about personal stuff in inappropriate settings. The more personal I can be, the better. So talking about myself in a more expansive, more indulgent way came a little too easily to me. But the vulnerability of talking about certain things that I had left out in previous tellings of my illness (the surgery on my butthole and then the other surgery on my butthole, namely) was much harder. Doing it incrementally definitely helped. I had to start small (I think in my first blog post I mention the word “diarrhea” once, and it was very hard for me to type) and then build up until I felt brave enough to post about the big scary stuff.
It also helps me to imagine that my blog is only read by strangers who I will never have to face. Something about picturing people from my high school reading about the inner workings of my colon is much more frightening and so I try not to think about that as I’m writing or else I might clam up.
But the main reason that I had to put aside my fears and talk about it was because I was so tired of being scared. I hated tiptoeing around my illness, and I wished people wouldn’t be so shameful when talking about it. I scoured the internet for articles, blog posts, anything written about Crohn’s that could make it feel human, brave, funny, real, and I didn’t connect with anything I found. So I decided if I really wanted it to be out there in the world, I would have to write it myself.
emmahumanbeing asks: Who was the first person you told after discovering your disease, other than your parents, and what was that experience like? Has telling people gotten easier?
You know, Emma, I don’t quite remember who the first person I told was, so I guess it wasn’t devastatingly significant to me. I’m sure it would’ve been my roommate at the time, Abby, because I drove straight from the hospital back to school and she would’ve been the first person I saw. Hang on, let me text her.
I don’t remember having any difficulty telling my friends that I had Crohn’s because it was what I had been hoping for. All I felt was relief and joy. I remember calling friends to tell them that I might have to drop out of school before we knew what was wrong, but I don’t remember the celebratory moment of telling them that we had figured it out. It’s all sort of a blur to me.
Telling people about my Crohn’s has always been very easy for me, I think because I’ve turned it in to something I’m quite proud of. I get to mention my blog and the work I try to do as a self-proclaimed advocate. I do get tired of telling people what I can and can’t eat, and I don’t imagine that will ever stop.
Ah! I’ve just received word back from Abby, and she doesn’t remember either. She said she didn’t realize the magnitude of my being diagnosed with a chronic illness at the time. I’m willing to bet I didn’t either.
d_w0lfson asks: What’s the hardest part of knowing you have a chronic illness and how does it affect your mental health?
The hardest part of having a chronic illness, for me, is knowing that it will always come back. There are so many unknowns in my future, but I do know that I will be in the hospital again at some point. I know that there will be a complication with my medicine at some point. I know that I will one day have to make a decision about having biological children and possibly passing this along to them. But there’s little else that I know. I’m not sure when I’ll have a flare, what job I’ll have at that time or who will be in my life, who will drive me to the hospital, where I will be living. It’s hard to think of my disease as serious and impending when I have to invent the rest of the world around it.
Perhaps the hardest part is when you get through a terrible bit of pain, whatever it is, and you’re on the other side, and you’re exhausted and weak and your body is slack with relief that it’s over, and some little voice in your head says for now. Because I will feel that pain again, it’s just a matter of when.
Surprisingly, I don’t feel that this has impacted my mental health too much. I do see a therapist but for entirely unrelated reasons… I rarely mention my Crohn’s to her at all. I do tend to worry more than the average person which could have been started by trying to control my illness when I was young, but that could also just be the kind of person I am. I’ve always felt a great divide between my mental and physical health, and I can often find that my mood improves when I’m sicker. Having something physical or bodily to fight can give me purpose and stave off a bit of my anxiety.
christinawinn2 and kendracook_ both want to know: What do you think about dating/relationships with Crohn’s, and when do you tell your partner that you have Crohn’s and how?
I think, personally, my Crohn’s disease should have very little impact on my dating life. I find that Crohn’s comes up rather quickly any time I meet new people because eating is usually involved and someone will naturally ask why I can’t eat certain things. I also know that I am extremely open about my disease in a way that not everyone is comfortable with, which is totally okay!!
I think there are two important conversations to have with a significant other about your Crohn’s: one probably a few months into the relationship when you let your partner know the extent of the limitations you are currently facing, or what might happen if another flare were to come on while you’re potentially in this relationship. This is when you tell them about your medicine and what they should do if you’re together and emergency arises. The second is if you are considering having biological children with this person, in which case you both need to be aware that the scientific and medical community is still unsure whether or not Crohn’s is hereditary and decide from there what you would like to do with that information.
As far as worrying that your disease makes you unlovable, or that someone needs to know upfront what they are “getting into,” I think all of that is a load of crap! Your disease is not the fine print. It is not something you have to avoid or be up front about or cross your fingers that the other person will be willing to deal with. A good person won’t let it affect how they feel about you, it’s as simple as that. Dating should and can be totally normal!
I understand that fluctuating weight and ostomy bags and surgical scars can add an element of insecurity to dating, and if you feel the need to warn someone about an aspect of your body that has been affected by Crohn’s that’s totally fine. But that person is also super insecure, just like you are, about something completely unrelated. The vulnerability is what makes it scary. That’s what makes it exciting, too.
kailimorens wants to know: How do you prepare to go out for the day knowing that how you feel is subject to change?
This is such a fantastic question, and one that ruled my life for so long! And the answer is so very simple. I give myself permission to get sick.
I’ve found that so much of the strive of having diarrhea in public is the struggle to pretend that you’re not having diarrhea. Same with abdominal cramps or headaches or joint pain. You feel like you have to smile through it and you can’t ruin anyone else’s time. One day I just realized there was no point in making myself suffer.
So if I start to feel sick I’ll just announce that I’m feeling sick. I’ll take a break, say I’ll catch up later. Once you eliminate the worry of “omg what if we’re out and I get sick and then I’m stranded feeling ill and then I ruin the trip and everyone has to go home and they’ll never invite me again,” the world will open up. What’s the worst that can happen? You’ll have to lay down in a public place. You’ll poop in a gas station or the woods. It’s gonna be fine.
Of course I understand that there will always be times when getting sick is not ideal, or when we can’t be upfront about how we’re feeling for whatever reason. In these instances I take precautions: I’ll eat very carefully the day before, I’ll pack foods that I consider “safe,” and I’ll pack extra medicine that I know I react well to. I’ll try to make sure I have an escape route if I really need it (a friend to pick me up, an excuse to duck out early). And then I make a wish or say a prayer and let the worries go. I tell myself, “Shan, if you’re going to get sick then you’re going to get sick. You do not control the world. You just live in it. So go out and live.”
You can only do so much preparing. At some point you’ve got to take the leap, else you’d never leave. And trust me, you want to leave. There’s good stuff out there.
melierose8 asks: If you had been born without Crohn’s do you think your life or personality would be any different to how you are now, and what would those differences be?
I do think I would be different. I can just barely remember a time before I got sick, and even then, the memories are fuzzy around the edges. But I can recall that I loved being outside more than anything. I loved the water, and I wanted to study marine mammals or work with marsh plants. My mom recently told me that for the first ten years of my life she was sure I’d become a botanist or a park ranger. I rode horses and joined a rock climbing team and only ever thought of my body as something to help get me where I wanted to go.
I was mysteriously sick for about ten years. The kind of sick that wasn’t given a name, and so I had to make it part of my personality instead. It wasn’t that I couldn’t go on the hike because I was too fatigued, it was just that I didn’t want to go. And it wasn’t that I was afraid to leave home because I didn’t know if there would be a restroom nearby, it was that I just didn’t like going outside as much. I was so young, I didn’t know how to articulate the changes in myself as internal rather than mental. I didn’t know how to explain to anyone that I didn’t want to make those choices, but rather I had to.
So if I hadn’t gotten sick I don’t know where I’d be right now. Maybe I would’ve done sports instead of theatre. Maybe I’d be living on a ranch right now instead of typing this on my laptop in my cozy LA apartment. Sometimes I miss that life that I felt I was supposed to have. I miss that girl that never got to grow up. But I do feel I was pushed off that trajectory for a reason. I ended up making the best of a difficult situation; I think that has made me into the version of myself I can be the most proud of.
_kyliejs_ asks: When did you finally decide that you weren’t going to let Crohn’s keep you from living as normal a life as possible?
I decided to live a normal life, as if I was not sick, when I was twenty years old. I was having clear diarrhea several times a day for months. I was dropping weight. But I was also in five classes and two plays and I wasn’t willing to give anything up. I ran myself ragged and ended up in the hospital. It was shortly after that that I realized I never really much wanted a normal life, and I embraced the weirdness I had.
To have a normal life with Crohn’s, for me, meant ignoring it. It meant doing things the way everyone else did them, even when that made me sick. I decided that I had been given a chance to do something bigger than normal. I took the bad thing and turned it into this blog. I gave up normal for the chance at something greater.
And then I never looked back.
victorialiciax (hi Victoria!!!) wants to know: What exactly is Crohn’s? How did you know you had Crohn’s and how did you cope with it when you figured out? What would you tell someone who’s figuring out themselves that they have Crohn’s?
Crohn’s is a gastrointestinal disease that can affect any of the “tubing” of your body, from your throat down through your intestines to your anus. Nowhere is safe!!! And it manifests differently in different people, with symptoms ranging from diarrhea and vomiting to arthritis and internal complications with organs.
The story of how I found out I have it is long and winding, but to sum it up I found out after a surprise emergency surgery to lance and pack a rectal/anal abscess when I was twenty years old. What that means is that I basically lived with this disease untreated for many many years and let it get very bad until it manifested in one of the nastiest symptoms of Crohn’s (an abscess) right on my butthole, a nice little neon sign saying, HEY GIRL, GET ANOTHER COLONOSCOPY LIKE, RIGHT NOW.
Recovering from the surgery was very hard. I was in constant pain and on a lot of medicine that puffed me up and kept me dizzy. But coping with the actual news of my diagnosis was like an incredible celebration! After years I had an answer, and with answers came solutions and treatments.
Not that there weren’t hard moments. The Christmas Eve I came home from the hospital and laid under the tree, too tired and drugged to make it to my bed. My dad, silhouetted by a hospital window, asking a doctor what the likelihood of my getting cancer was. The parties I missed out on while I laid in bed, watching movies about college kids at parties.
If that’s where you’re at, you have to settle in and hope. I know it’s frustrating because it happens slowly, but you do get better. And then you’ll get worse again. You know how it goes. I know it feels like the most important part of your life right now. I know it feels like your disease calls all of the shots. But one day it will be an afterthought. One day you will wake up feeling good, and you will be able to eat that thing you want to eat. Hold on for that day. Future you will be grateful.
plastikcake asks: What is the thing that you really, really want to do, but know you can’t because of Crohn’s?
Two things. Eat a soft pretzel and be on Survivor.
Once I got really sad about a boy and applied to the Peace Corps but they denied me because I’m diseased. That last one is more a story of how sometimes having Crohn’s saves my butt, sometimes, too.
hollspatrick wants to know: Have you ever been embarrassed of your disease? If so have you gotten over that? And if so, again, how?
Yes, yes, and oversharing!!
I spent the first ten years of my illness being embarrassed of it. I was ashamed before I even knew I had an illness! I ended up in the hospital because I had an immense pain in my butthole and chose not to tell anyone about it because, like, gross. And then once I was in the hospital getting surgery on said butthole, I wouldn’t tell anyone why I was there! All that secret keeping was exhausting. I had to hide my pain because it was icky pain. That sucked.
I got over it in a few key ways. The first is just that time passed and I was able to open up, in my own time, selectively, to the people I wanted to. I shared as much as I was comfortable with and nothing more. But I got used to sharing. The second is that I entered a relationship very soon after my diagnosis and was able to feel beautiful and sexy and not yucky in that relationship. I realized that my disease did not make me less lovable.
And the third and most important way I got over it was by writing this blog. It’s the greatest oversharing loophole! I get to talk in great detail about things that would have been so embarrassing to say to someone’s face, and then post it for the world to read. It feels all at once vulnerable and safe.
I started with humor and then I added my heart. Now I just try my best to write about what’s real. Sometimes I still get embarrassed when I picture certain people reading this (my dad, my uncle, basically my dad’s whole side of the family and also that guy who I friended on facebook after his really funny standup set) but hey, that’s more their problem than it is mine. You just get so tired of being ashamed, you know? I’d rather put my energy into being honest.
victorialforbess asks: What advice would you give to younger people who are struggling to adapt to live with Crohn’s? Do you have any advice for the people in their lives of how to help them either physically or emotionally?
It’s hard for me to think of what advice to give a young person who has been diagnosed, because I was twenty by the time I was diagnosed. I suppose it would be very difficult to be assigned another thing that is out of your control, and now you have doctors bossing you around in addition to teachers. It must also be very hard to stick out in certain ways when you’re just trying to blend in. To a young person who has just been diagnosed, I would say try not to worry about the implications of this diagnosis. There will be time to understand medical jargon and schedule your own doctor’s appointments later. For now, listen to your mom. Trust her when she says that you can’t eat that thing. And try to hold on to the hope that this will turn you into an even greater version of yourself. And if that seems like a bunch of crap, then hold on to the hope of a cure in your lifetime!
Advice for how a friend can help a loved one who has been diagnosed: rally around them. A diagnosis can operate on the same timeline as a death or grief; it doesn’t just dissipate in a few weeks. This is a change that will stay with them for the rest of their life. Keep checking in, even when it feels like the dust has settled. Learn what they can and can’t eat and talk to a waiter about it if they seem too shy. And protect them. Other kids will ask probing questions that your friend may not know the answers to. They should’t have to as a kid. Cover for them if they’re sick. Be a confidant. Be cool with diarrhea talk.
Those are the things I would have wanted someone to do for me.
rae_sullivan wants to know: How has having Crohn’s empowered you?
I think the biggest way Crohn’s has empowered me is that it’s made me brave. It gave me an adversary to fight and a purpose in sharing the things I’ve learned from that battle.
I’ve always been a bit directionless. And I’ve wanted to write, I’ve always written, but I never had a reason. Crohn’s gave me a reason. It gave me a story.
I am stronger now. I can stand the pain. I learned the hard way.
I wish I could tell you that it inspired me to go for my dreams because I realized that life is fragile. The truth is that life is fragile, but I was always going to go for my dreams either way.
There are people who go their whole lives just trying to let their guard down. My guard was knocked down, abruptly, when I was ten years old. I never bothered to rebuild it. I find my greatest power in vulnerability. I think that may be a lesson best learned pantsless, while a doctor stares directly into your butthole, but to each his own.
(if you’ve asked a question that didn’t get answered, I will answer it in part two!)