This past weekend I saw The Big Sick. If you haven’t already you should go see this movie. It’s based on a true story about a couple navigating the first year of their relationship and dealing with cultural differences and oh yeah, the hilarity that ensues when you’re dating someone and that person falls into a coma. Yes, it’s a comedy.
Comedian Kumail Nanjian co-wrote the script and based it on the first year of his relationship with his wife, Emily V. Gordon. Spoiler alert, since Emily co-wrote the script, I can tell you that she lives. This movie had many heartfelt moments, but more so I found myself laughing.
A large part of this story was about a young woman facing a medical crisis and the ordeal her loved ones go through. How is this a comedy? Because it’s okay to laugh. Illness, challenging moments, relationship issues, these are all a part of life. Are there certain emotions we aren’t allowed to experience when we face tough times? We are human and we need to feel something, and I (most days) choose laughter.
I have faced some challenging moments in my life and I can only think of a few days where I never laughed, and probably because I was sedated. Even during my darkest times, I try to find the humor in any situation. I can see how people react when I crack a sick joke. There’s that brief hesitation, they know what I said is funny but is it okay to laugh? Yes! I don’t speak for all sick people, but I’m saying it’s okay to laugh.
There’s a difference in laughing at us and laughing with us. Remember the time I had a one night stand with a surgeon and then a few weeks later ended up in the hospital with a broken vagina (vaginal fistula) needing surgery at the hospital he works at? I’m not Heathcliff from Wuthering Heights, I’m not going to stand in the marsh and brood about it. How lame. I’m going to fucking laugh about it because otherwise, I would have lost my damn mind by now.
Last year a new tv show popped up on my radar and I instantly fell in love. Speechless, starring Minnie Driver and a fantastic supporting cast, is about a family with a child with special-needs and the challenges they face. It’s a comedy and a damn good one. Thankfully ABC picked up the show for a second season. I hate getting attached to a new show that gets the axe way too soon.
What I love about Speechless, among other things, is that it doesn’t just focus on the illness. In this case, one of their kids suffers from Cerebral Palsy. It’s about the entire family and what they go through with a special needs kid. Again, like The Big Sick and in life, there are heartfelt moments among all the jokes.
When you have a chronic illness your family adjusts to your special needs. Life doesn’t stop, it continues, just with a few changes. Your family finds a way. Why must I wallow in all the bad moments of my life? The world can be a depressing place, why make it worse?
Laugh at yourself. Laugh at your illness. Laugh at the weird moments. Laugh at the tough moments. Laugh at the worst moments because those are the best laughs.
You would think it’s common sense that fatigue comes with a chronic illness, but some people don’t really understand. Right now, as I’m writing this (from bed), I want to go to sleep. I slept through the night, went to bed on time and woke up after my alarm went off. When I woke up, I felt drugged almost. All day I fought to keep my eyes open. At work, I went to the bathroom to pee and closed my eyes for a second and almost dozed off. True story.
I’m not in a flare up right now, but I’m not in remission, meaning I still have active disease. I don’t have the same levels of energy as normal people. You would think that is obvious, but sadly it’s not. Also, please don’t suggest that I just need more sleep. No, that’s not it. Crohn’s Disease is an auto-immune disease, meaning my own body is fighting me. I’m at war with my own body EVERY SINGLE DAY. It’s exhausting.
I also suffer from anemia, another side order that comes with the main entree of Crohn’s Disease. I see a hematologist and get iron IV infusions to bring my iron levels up. It helps, but if I have active disease I’m never going to be 100%.
I just have to know my limits. I need to know when to take a step back and relax. Not always the case, but I try. Again, getting more sleep isn’t the answer. I just have to ration the energy I have. A lot of people use the spoon theory to explain this. This is where the term “spoonies” comes from.
In the past I’ve managed to be physically active, even with active disease, but sometimes that isn’t always the case. It’s been almost 17 years and I’ve adjusted to a life with limitations. Sometimes I can do it all and other times I can’t. How do you handle fatigue? You manage your life around it somehow. On a day like today I went straight home. If I had any plans I would have cancelled them.
Driving home was a challenge, I may have taken a few yellow lights just to get home faster. The thought of collapsing in bed kept me going those last few minutes. As soon as I got home, made myself something to eat, changed and fell into bed, I didn’t fall asleep. Surprise! Like I said, more sleep isn’t really the answer. But just laying in bed not having to worry about ANYTHING made me feel ten times better.
I’m not lazy, my body is physically depleted and I have zero fucks to give about anything. There are casualties to the war that wages on inside my body, and my energy is victim number one. Drinking a cup of coffee or getting more sleep isn’t going to help, so I know you mean well, but please stop suggesting it.
There’s no simple answer here besides achieving remission. I just have to try and continue to manage my fatigue. Time for a nap.
I used to suffer from terrible gas pains, they were the worst. I can’t really explain it, but if I laid down and turned on my side I could relieve the pain by passing gas, yes, farting away the pain. It was amazing.
Now a days, it’s not really the same thing. Do people with ostomies fart? Yes, we fart. However, our stoma doesn’t have a sphincter, meaning, I have no control. It’s why we have to have a bag sealed around the stoma.
You normal indoor plumbing people have a sphincter, and therefore control when you go. Ever hold in a fart? Thank your sphincter.
I miss being able to fart when I need to, I now have to wait for the gas to come out, and I can’t really shake it out. The problem is my stoma lets gas out whenever, sometimes quietly and sometimes it can get a little noisy. I can put my hand over my stoma and muffle it if I’m in a meeting or somewhere with people and it’s quiet. If I’m home or by myself, I don’t care. I let my stoma sing!
When I do fart, you can’t smell it. The bag is sealed and that keeps in odor. My bag will balloon up, gas fills up the volume of an empty space (science). You won’t notice, I will. I will “burp” the bag, let out the gas, when I go to the bathroom. The beauty of this is that you can’t smell my farts, I can release the odor elsewhere and use an air fresher to cover my tracks.
I wouldn’t trade my ostomy for indoor plumbing, but I miss being able to fart on my own! If you have an ostomy you know what I’m talking about. There’s a certain joy in farting that we no longer have. Don’t take your farts for granted.
Did I say farts too much? Also, yes, girls fart. Deal with it.
I work a full time job and if you are reading this then you know I have a chronic illness and with that comes sick days. When I’ve made the decision that I can’t go into work I then have to call work and let them know, usually I call my boss (or text). Without fail I always feel guilty.
When I’m in pain or not feeling well you don’t always hear it in my voice. How am I supposed to sound when my bowels are inflamed? I’m not coughing or sneezing, I don’t have a cold. I may sound a little tired, but I pretty much sound the same, just not as happy as I usually am. There’s this feeling that we have to “act” sick to convince people we aren’t faking it, which sounds absurd.
Part of the reason that I feel I have to convince someone I’m sick is because I have what is known as an “invisible illness.” You can’t see my internal turmoil. Crohn’s Disease is autoimmune, which means I’m being attacked by my own immune system. My body wages war against me every day and it is EXHAUSTING. You can read more about this in a post I wrote for The Mighty.
Back to my original point, feeling guilty. I don’t know why, but it never fails. Here is what goes through my mind on mornings when I decide to call out sick:
Is it really that bad?
Can I make it out of bed?
What do I have to do today at work that can wait?
What if I get up and shake it off?
What if I just go in until lunch time and take a half day or leave early?
What if this is all in my head?
What if they get mad that I’m not at work?
Will I get into trouble?
How many sick days do I have left?
Is this just a one day thing?
Having all these thoughts run through my mind on top of feeling like shit is physically and mentally exhausting. These are all things I shouldn’t even think about, but I do. I once had a coworker tell me, “You’re not that important, we can survive without you.” Ouch, but context. The point she was trying to make was, no one is going to die if you can’t come in, stop worrying about. The only thing I should be thinking about is my health.
Easier said than done.
I don’t think I’ll ever make any progress on this, but I will try.
I actually haven’t watched Girls since the second season, at first I loved everything about Lena Dunham, she spoke her mind and it was fabulous. I wasn’t a fan of everything she said, but I still have a lot of respect for her and sometimes she says things that really stick with me.
“I’ve accepted that my body is an every changing organism, not a fixed entity – what goes up must come down and vice versa. I smile just as wide no matter my current size because I’m proud of what this body has seen and done and represented. Chronic illness suffered. Body-shaming vigilante.”
This right here is something we need to remind ourselves of on a daily basis. Our bodies are constantly changing, we have been through a lot and we are still standing. Our scars represent the battles we have won.
“So my weight loss isn’t a triumph . . . “
My weight goes up and down in between flare-ups, thank you Crohn’s Disease. These days I’m pretty much around a size 6 (US size), compared to the barely size 0 back in the day, which was awful. Skin and bones. Now, anytime I drop a few pounds, people who don’t really know much about me will comment on my weight loss if they notice it. Congratulating me. Weight loss isn’t a celebration for everyone. It’s not something I celebrate, it’s something I fear.
I’m not talking about people who choose to live a healthy life and get fit. That’s great and I know not easy. Weight loss celebrations aren’t universal. All of our bodies and health journeys are different. Weight loss isn’t the ultimate achievement that everyone needs to strive towards, being healthy is the goal. Celebrate health.
When I was first diagnosed with Crohn’s Disease I was severely underweight. I remember when I hit 100 pounds, my mom and I had a little celebration. It was a struggle to stay about 100, every flare up would hit hard and knock five pounds off, if not more, easy. Five pounds on a tiny 100 pound girl is a lot. I was always so weak, it made it difficult to fight the flare ups.
It wasn’t until 10 years after my diagnosis that I hit a normal healthy weight. I had to buy bigger clothes, which was a good thing. I used to purchase clothes from the little girls section, and while cheaper, the styles weren’t always meant for a 21 year old. Having some curves and feeling stronger was such a relief.
Even though I’m no longer underweight, if I get hit with a bad flare I easily drop 10 pounds and I’m close to being underweight again. Some people who don’t know what is really going on don’t mind saying things like, “Oh wow, you dropped a few pounds, good for you.” I know they mean well, but ugh, stop. I’m battling a chronic illness and it’s getting the better of me, I don’t need your mindless observations. Weight loss isn’t always great.
One time during that first year after being diagnosed, a person who I will not name here, also an actual blood relative and someone who had the same disease (not my mom) actually told me, “You can never be too skinny.” Are you fucking crazy? Yes, you can be too skinny, being underweight is an actual problem. People die from undernourishment.
I know, most people don’t know this so that’s why I’m talking about it. Weight loss isn’t always a celebration, weight gain was always the goal for me. Trust me, there have been comments like, “Just eat more,” or, “Wish I could borrow the disease to lose a few pounds.” Even better is when people tell me I’m so lucky because I can eat whatever I want and not have to worry about gaining weight. Stop, just stop.
It’s so common to celebrate weight loss people just don’t even think about how our bodies are so complex and different and not everyone has the same physical goals.
“Because my body belongs to ME-at every phase, in every iteration, and whatever I’m doing with it . . . “
When it comes to your personal struggles and battles with a chronic illness, when is it okay to share on social media?
I used to be very private with my battle with Crohn’s Disease. Pretty much the first 10 years I wasn’t very public about it. I was diagnosed pre social media (remember those days?) and every time I was in the hospital my mom would have to make the many many phone calls (including an international call to my father – long story, we used to keep him in the loop). That’s what we had to do and we dealt with it.
Even as Facebook began to overtake our lives, I didn’t really post about my health. I’ve found old Facebook statuses that have vague comments about not feeling well here and there. Remember when Facebook made us talk in third person?? At one point I had created lists among my Facebook friends and I used these lists to only update close friends and family when it came to my health. I loved this feature. I didn’t have to share personal information with every freaking person, just those I wanted to keep in the loop. (This feature might still exist).
Then in 2011 when I began blogging I discovered Twitter. On Twitter I found hundreds of others like myself and I felt more comfortable talking about very personal health issues. Odd, isn’t it? That I felt more comfortable talking about it with strangers than I did with my own friends and family? I think it has a lot to do with how embarrassing Crohn’s Disease can be. Talking about pooping my pants with people I know is difficult, talking about it with strangers from around the world who could relate is so much easier.
After I opened the floodgates via twitter and blogging I couldn’t stop sharing and I learned to post about my issues on my own personal Facebook page. I probably annoyed some of my friends, especially when I began fundraising with Team Challenge. Sorry for annoying you with posts about my disease and how I’m running a half-marathon to try and find a cure. Most people were supportive, but I heard some comments through the grapevine.
According to certain people, there are things that should be kept private. Here’s the thing. We are all completely different. I can tell you that I gained nothing by keeping it all in, in fact I probably only hurt myself in the long run. This disease makes you feel ashamed of yourself, and with shame comes the inability to open up. To the people who want to keep their struggles private, I am in no way trying to shame you. You do you. But to the people who THINK they know how we should handle our struggles (especially when they know nothing about it) I beg you to walk a mile in my shoes and then keep it to yourself. If you don’t like what I’m saying, you don’t have to listen. This isn’t forced upon you.
Don’t let anyone make you feel bad for sharing what you are going through. There are no set rules anywhere. Social media is still pretty new and is constantly changing. We get to decide how social media works for us, and that’s that.
I’ve been known to post ER selfies from time to time. While I may be in a sucky situation, at least I can use social media to keep people updated and show that I’m okay. I’ve even Snapchatted my way through a colonoscopy prep, which is a weird way of trying to entertain myself.
Trying to bring it back to my original point. When should you post about your battles and when should you not? I sometimes find myself holding back because I don’t want to worry family members who read my posts. Other times, I just can’t be bothered because then I will have to constantly update people on what’s going on. I have no set rules, I post what I want and when I feel like it. There are hospital stays that go without any mentions or ER selfies, and there are others where I’m live tweeting everything. I do as I please.
Over the last few years I have found a balance that works for me among the different social media platforms. I don’t use them all the same way. This is the formula that I feel comfortable with and have developed over the past few years.
Personal Facebook – I typically don’t post anything regarding my health on a typical day, unless it’s a major update regarding hospitalization or surgery. I also will post anything related to fundraising because I want that $$$.
Facebook Page – I created a Facebook page for The Sick Adventures of a Semi Colon Girl to have somewhere on Facebook just for my health related posts. I invited my personal contacts and they can choose to follow for my updates. This is also a great space to promote my blog. This way you are only “annoying” those that choose to want to hear about your updates and not really nagging your personal contacts that aren’t interested.
Twitter – Twitter is all Crohn’s all day long. I also post personal opinions about shows, movies, pop culture and politics. I’ve had some political comments take off (cough 600 retweets cough). Plus Twitter is a great platform to post multiple posts in a day. People on Twitter follow you because they like your posts, they want more of it. The more you post, the more followers you get. This is the platform for you if you have a lot to say about everything and anything. We all have that friend who posts a million times a day on Facebook and we roll our eyes. On Twitter, that kind of stuff is encouraged.
Instagram – Last year I made a big change to my Instagram. I made it private. Now, I thought about creating a personal one and keeping my Semicolongirl account public, but I thought that was a pain in the ass. I already have a work account I manage, I didn’t want to toggle between so many different accounts. I love pictures and in my personal life I like to share things with my close friends and family. I decided to keep my Crohn’s posts on twitter and my Facebook page and leave Instagram private. Sorry if I blocked you, it wasn’t personal. Although Instagram is such a great platform to connect with others, I opted to make my account private. I did receive more than one message from people asking why they were blocked. That’s the story.
Snapchat (username Semicolongirl) – I’m relatively knew to the Snapchat game, but I’ve grown to love it. It’s a lot of fun, especially when I’m bored waiting at the doctor’s. It’s a great way to post multiple pictures from the hospital and other Crohn’s related pics. I roll my eyes at those who post multiple Instagram pics, but multiple Snapchat photos? Yes please! I use this to post pictures of my cat and silly selfies, nothing ground breaking. I don’t use it everyday, so I may not be the best Snapchat user, but I do have fun with it from time to time.
Like I said before, you really have to find what works for you. You shouldn’t feel obligated to post, social media is supposed to be fun and supposed to connect you. You can use it as a tool to find a support group and more information about your illness, like I have. You shouldn’t feel the need to hold back because you’re worried about annoying someone. Honestly, if someone doesn’t want to hear about your posts they can unfollow you. No harm done. Don’t be offended if you find out someone has unfriended you or unfollowed you, more important things going on in your life than social media numbers.
Happy posting! Post what YOU want, when you want and forget about the rest. Your social media is about you and you get to decide what information you want to share, no one else gets to dictate that.
I’ve had Crohn’s Disease for almost 17 years. I’m still learning new things, but for the most part I know how to handle it. I know what to eat, what not to eat. I know what to avoid and when to hold back on outings and socializing.
Sooooo when someone comes along, especially some random stranger that doesn’t even know me, offering “friendly suggestions,” it drives me up the wall. Now, I don’t immediately explode because I try to understand that in this person’s mind they are trying to help. They usually have good intentions. Some are just arrogant assholes who think they know everything.
I don’t want to sound like a bitch, but I don’t want your help. I have tried EVERYTHING. I know the tricks. Guess what? Everyone is different, so just because your college roommate’s 3rd cousin’s girlfriend’s uncle has Crohn’s Disease and he tried this flax seed bamboo whatever from Whole Foods and it made him feel better, doesn’t mean it’s going to work for me.
Don’t offer medical advice to strangers. I’m aware I have a disease and I’m constantly in communication with my doctors. You don’t know everything that is going on, you don’t know what I have tried and what I have gone through.
Don’t start telling me that if I eliminate GMOs from my diet I will be cured. Newsflash, that’s complete bullshit. GMOs are safe and if you are into food that is non-GMO, all you are doing is paying more money for a label. Science backs me up on this. Same thing for organic food.
I don’t want you to cleanse my chakras or use your crystals/magnets/magic beans on me. No, no, no. I want you to let me handle this the way I choose. I don’t want that look or side eye that says I’m an idiot for ignoring your unsolicited advice.
Listen, in most situations I’m polite, my mother raised me that way. Just know, internally I’m screaming at you to back away with your nonsense. You don’t know what you are talking about, you only think you do.
So random acquaintance/stranger, leave me be. I’ve got this.
As you read this, I need you to curtail the “you’re crazy” reactions. I’m going to get a little personal today and since I’ve opened up about my bowel movements how much more personal can I get??
I’ve mentioned before that I was what I referred to as “chronically single” for much of my twenties. Read “Adventures in Dating”. After more than a few rejections due to my illness I came to this absurd decision that I was fine by myself.
It’s not like I was sitting at home by myself sharing ice cream with my cat . . . well not EVERY day. I was making friends and enjoying my life. I decided that this was good. I can still have a fulfilling life and not burden someone with my illness.
Yeah, I’m insane, whatever. Just give me a chance to try and elaborate my thoughts.
I always felt like a burden on my mother and thankfully I have learned over the years that when you love someone it doesn’t matter. My mother was diagnosed with Crohn’s Disease back in 2008, eight years after I was diagnosed. Having our roles reversed was shocking but it did help me realize what it meant to take care of someone you love. I discovered that it could never be a burden.
Now bearing in mind that I understood that you can’t be a burden on someone you love, I didn’t want to willfully recruit someone to have to deal with my life. I know it is crazy, but it made sense to me. I believe that us chronically ill think differently, we adjust to a different life in order to get through it.
I believed that if I cared for someone, I wanted them to live a wonderful happy life that didn’t include the mess that comes with mine. Even if that meant that life wasn’t with me. I wasn’t feeling sorry for myself, I just wanted to save others from a difficult road. I knew how to handle being sick and I knew how that can change someone’s life. I had happily convinced myself that it made sense and I was good. For the most part.
Then a funny thing happened. I fell in love. And everything I thought I knew went out the window. I’m not sure if I was trying to convince myself to settle because it was easier or if I was just scared. Probably a little of both.
It wasn’t the first time in my life that I was wrong, and it won’t be the last. I’ve learned a lot this past year about letting someone in, especially when it comes to life with a chronic illness. I’ve always had family and friends there for me, but having a significant other right there when you need them is new territory for me. It’s been eye opening. It’s something I can get on board with.
I don’t claim to be a relationship expert, I’m not. I’m not saying you need to be in a relationship to feel complete, just that you should be open to it. I once went to a psychologist because I was sick and depressed. He was concerned that I was single. I was concerned that I was never going to get better. Needless to say I didn’t go back. (How was I supposed to go out on a date when I could barely make it two steps outside???)
If you can take anything away from this post, let it be this, don’t settle for being alone because you’re afraid or don’t want to burden someone else with your life. Enjoy your life as much as possible and it will begin to make more sense.
I know *you* will read this at some point – thanks .)