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Why It Never Dawned on Me to Be Angry About My Crohn's Disease

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Several times people have asked me if I am mad that I have Crohn’s disease. They will say things
like “Wow, I can’t imagine how angry this must make you” or “You don’t seem upset — don’t let anger build up inside of you for too long.” It never has dawned on me to feel angry. Actually, I cannot remember the last time I got mad about anything.

It has been years since I have yelled out of anger or deemed a situation infuriating. I have not been consciously restricting these emotions; they just do not manifest within me. I am extremely even-tempered and it keeps me mindful of the things in life that are important instead of getting enraged over trivial happenings. I don’t know what anger feels like anymore, and I think that is a good thing.

Having a disease changes a person, and one of the ways mine has changed me is that it allows me to put everything in perspective. I cannot change the fact that I have a disease, so why would I get mad over it? Don’t get me wrong, my emotions definitely have manifested as sadness as it relates to my illness, but I think that is a much less detrimental emotion to experience and portray.

Anger is scary. It is intimidating and affects other people. Anger gets misplaced and taken out on others or turned inward, but either way, I don’t believe it’s healthy. I have enough health problems to deal with, I don’t want to add high blood pressure to the list. Moreover, I don’t want anyone to think I am mad at my disease because my disease is a part of me. I get sad sometimes when I am in a flare as would anyone in my situation, but I refuse to beat myself up over that which I have no control. I have no say over my disease and consequently some aspects of my life, but I do not see that as maddening, I see it as an opportunity.

If I feel myself getting frustrated when I cannot do something because of the limitations imposed on me by my disease, I remind myself of what I can do. When I am sick I can’t always attend class, or exercise, or hang out with my friends, but I can always choose to see the brighter side of things. I can focus on the loving family I have, my exciting plans for the future and find other activities to make me happy. This process of reframing my limitations less as sources of anger and more as opportunities to find joy in life has become second nature.

My patience and composure when it comes to my disease trickles down throughout all aspects of my life. I don’t yell, I don’t get mad at myself when I make mistakes, I don’t engage in drama and I will never hold a grudge. Life is way too short to be burdened by hostility directed toward others or myself. When asked if I am mad about my disease, the answer is always no. I have been sad about my disease, I have been confused by my disease, I have lost a lot because of my disease, but I will never be angry about it because I love the person it has made me today.

I can handle my chronic illness. To be honest, a lot of people couldn’t. I don’t want to say that I feel like I am taking one for the team, but I do think that I was given this disease because I am capable of managing it. Beyond that, I am capable of leveraging it as a tool for personal growth. Once I started blogging and writing publicly about my disease, so many doors have opened for me. The people I have met, the outreach I have received and the love I feel daily makes me so thankful to live the life I do regardless of my medical situation.

I truly feel like I have nothing to be mad about. Sure, flare-ups suck. Missing out on life every once in a while, growing up too fast, and forgetting what it’s like to be and feel “healthy” has been hard. I wake up every day and am reminded that I have Crohn’s disease. It is on my mind constantly, especially in the midst of a flare-up. But everyone has their “something.” Everyone has a problem that is on their mind constantly; it may not be an incurable or chronic problem, but hardships exist. Setbacks and struggles have the potential to elicit anger but they also have the potential to make us stronger people. So no, I am not mad. I am stronger.

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To the People Who See Me as 'Bitter' Over My Crohn's Disease

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Considering I have been diagnosed with an incurable disease like Crohn’s, I feel I have every right to be upset, and often, that’s how I decide to cope with my issues. If you were put in my shoes sometimes, you would be troubled too. I am struggling with a poor prognosis from medical doctors. There’s no easy fix.

But to the outside world, I am “bitter” or “derisive.”

I have every right to be angry about my issues because they are a major ordeal to me, lest you forget they are mine to deal with.

On to the outsider, I’m “needy” and “negative.”

Truthfulness about my disease is not negativity. Imagine your life with an ailment or illness of any kind. Imagine how it would affect you, and how it would affect other participants in your life. These diseases and illnesses don’t just happen, they happen to you and to your family — you do not get a choice. For two plus years, I’ve dealth with feeling bad, fatigue, night sweats, headaches, skin sores, joint pain, vomiting, stomach cramps, insomnia, and overall bowel issues. They’re the worst. On top of that is the stress and worry that comes with living with these issues every day.

My body hurts, and my mind gets tired.

I look at myself in the mirror and I find problems that weren’t there the day before. I look at my Crohn’s body, trying to see if there are any visible signs of my illness, for sores, for pain, for bruises. I live in my bathroom most days. I try to keep up with my problems and symptoms because I know they’ll up and vanish on the day of my appointment (go figure). Most days I won’t even eat until dinner, and I haven’t been able to keep that down lately because my stomach just feels wrong. I have to worry about having issues in public, at any given time. I want to not be embarrassed to show my face or skin, and I want to be able to feel “well.”

To some, staying at home and not working would be an ideal lifestyle, but they have no idea what I am dealing with every day.

Every. Single. Day.

These issues are a big deal to my family and my future, and they can lead to even more problems, like emergency surgeries or hospital stays.

But on the outside, I’m just “angry” and “dramatic.”

These are issues I am going to have to live with for the rest of my life, and these issues have changed so much of my life already. When you have an issue like mine, time will not help and time will not fix me, medication and doctors can only help to an extent.

But on the outside, I’m just “sick” and “expect something from the world.”

I’m young, but I know this will always be a part of my future. That’s why I’m bothered. I am afraid these issues will never get better.

But to the outsider, I’m just “snide” and “unpleasant.”

To the outsider, I’m “scathing” and “harsh.”

I have every right to be cross. I am afraid nothing can be right within my body. I have every right to be bitter and concerned by my circumstances. I know it could be worse, but I have every right to worry about what’s next. I have every right to dwell on my symptoms because that’s my life.

But to the outsider, I’m just “perturbed” and “anxious.”

Like others with chronic illnesses, I can’t control it and I didn’t cause it. This struggle is what we get to look forward to for the rest of our lives. This struggle is what I get to look forward to for the rest of my life. So what if I’m bitter? I might be.

Thank you for reading, and for keeping up with My Crohn’s Journey. Check out Pinterest and our Facebook for daily updates!

Image via Thinkstock.

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5 Things I Want You to Know About Crohn’s Disease

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Here are five things I want you to know about Crohn’s disease if you don’t know about it — or me — already:

5. Crohn’s is a disease.

OK, so that one was a given. Crohn’s is a disease specific to the gastrointestinal tract or GI tract. Crohn’s makes all the processes of your stomach more difficult, because your stomach is fighting against itself. Healthy bacteria “are mistaken for harmful invaders and the immune system mounts a response,” according to the Crohn’s & Colitis Foundation of America. So your body induces inflammation to fight itself, which doesn’t just go away like normal.

This causes ulcers and intestinal wall thickening, which leads to more inflammation in the cycle. Eating gets harder and more dangerous, so getting the nutrients your body needs is harder, and your bathroom visits become that much more frequent. 

4. Because Crohn’s is a disease within the GI tract, it can happen anywhere — from top to bottom.

Some patients will have issues that can be viewed with a “normal” endoscopy — a tube with camera down the throat, and some patients have issues that can be viewed with a “normal” colonoscopy — a tube with camera up the bottom.

Some patients, like myself, require further tests and have to get scopes that can look deeper into the stomach. For example, I’ll be getting a double balloon endoscopy, a scope that takes significantly longer because they have to go in further to find the inflammation. Because Crohn’s can happen anywhere in your belly, from entry to exit, having ulcerations in multiple locations was a telltale sign of IBD, specifically Crohn’s. (See “My Crohn’s Plan.”)

Crohn’s can cause kidney and liver problems, mouth sores and can even lead to osteoporosis. Not only can you have symptoms on the inside, but you can have issues on the outside: skin problems, joint problems and eye issues. Sometime they will be present, sometimes not, which makes it harder to diagnose.

3. It can take years to diagnose.

With a disease like Crohn’s, finding the problem can be difficult. There’s no one specific test for Crohn’s, according to the Crohn’s & Colitis Foundation of America, and inflammation could be happening at the wrong place or wrong time during testing.  

For some, a colonoscopy and blood tests will prove inflammation, and a diagnosis and prescription will be made. But for others, it can take months or years to get a diagnosis — even if you have symptoms systemic to Crohn’s. 

Some symptoms will be shared, while others will have symptoms that are unique to them. For example, I haven’t had a problem with fresh fruits or veggies to the extent that I can’t eat them. But for others, they have to avoid fruits and vegetables in order to avoid a flare-up or bowel obstruction. Some have persistent diarrhea, while others have constipation. Some have night sweats, while others can lose weight so quickly that it can be scary. 

If you have a Crohn’s diagnosis, then you’ll probably have your own issues with your Crohn’s. I was lucky in a sense that my diagnosis only took only two years, but we’re still in the process of figuring out remission. 

Others are still trying to put a name to a problem that has ailed their bodies. It’s not something to look forward to, but a diagnosis means so much to someone when they have problems and aren’t getting answers.

2. You have to get comfortable with your body.

Doctors will continuously want to feel around and “apply pressure” to your abdomen, so be prepared to offer your tummy up for every appointment. And this is a bowel disease, so you’re going to show a lot of people your bottom area. With colonoscopies, surgeries and check-ups, I’ve gotten pretty comfortable being around my doctors. 

Not only has Crohn’s help me with becoming more comfortable with that part of my body, but it also helped me find humor in all things bowel related. If you know me, then you know I never shy from inappropriate topics or from speaking my mind, but before Crohn’s, “bathroom-related issues” were never in my conversations.

With my Crohn’s, “all things bowels” have taken over my life, and almost every conversation I have during the day is based on them. I talk to doctors, my husband, my friends and my family about my bowels and stomach. I write about them on my blog, and I share updates about my disease. 

I would never have discussed bowels or anything of the like a few years ago, but I guess Crohn’s has helped me find humor in them.

1. People won’t care and that’s OK.

I’ve found myself in conversations with friends who haven’t read my blog, while strangers from all over the world are following my journey and wishing me well.  At first I took offense — “You didn’t read my blog!” But I view it as either you want to read it or you don’t. It’s pretty simple.

I have 900 Facebook friends, but my page about my Crohn’s has less than 200 likes, so that hurt my feelings at first. But you can’t expect everyone to care.  Some people won’t care and that’s OK because bowel stories aren’t for everyone!

So with that in mind, don’t cut us Crohnies out of your life.  We make plans and break them. We can’t determine how our bodies will feel at any given time.  We’re trying. We still need help sometimes, even if we haven’t asked. 

And I hope everyone reads this because you never know when a friend will have to deal with a disease to the intestines. You never know when your life will change drastically, and you have to completely alter yourself.

A longer version of this post first appeared on MaryMHorsley.com.

Lead photo source: Thinkstock Images

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What Crohn's Disease Cannot Take From Me

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In the three years since my diagnosis, Crohn’s disease has taken many things. My new life has been a constant game of tug of war: with every tug toward illness and despair, I dig in my heels and begin the fight for health and positivity. While I’ve gained so much ground, earning uncompromising strength, compassion and knowledge of the human body, I have lost a few things. My pace has slowed and my priorities have adjusted without my consent. I have mourned the old me who was full of fire.

Crohn’s has stolen my energy. It has mangled my blonde locks like a 3-year-old with scissors. It has taken my friendships and altered them, requiring more maturity and understanding. Some relationships, unfortunately, did not make it. It has taken my time, frittering it away in waiting rooms, exam rooms and hospital beds. It has condemned many of my favorite foods; vegetables, apples and granola are all distant memories. The monster has even ransacked my colon! Crohn’s disease has taken many things, but there is so much more it will never touch.

Crohn’s disease cannot dilute my creativity. The wonders I can create are my own sentimental reminders that though my hands may shake, they still craft beautiful gifts.

Crohn’s disease cannot steal my endearment toward children and their hearts. Nor will it make my heart guarded against starting my own family.

Crohn’s disease cannot steal away my self-esteem. I am helpful, caring, sarcastic, intelligent, funny, bull-headed and sincere. My winsome soul shines through dark circles, stretch marks and scars.

Crohn’s disease cannot rob me of my love for ’90s music and bad dance moves. You can bet your bottom dollar, whether flaring or in perfect health, you’ll find me doing the cabbage patch to my *NSYNC playlist!

Crohn’s disease cannot snatch my love for animals. I will always bring home the stray and love him. And let’s be honest, nothing’s better than puppy cuddles on a bad gut day.

Crohn’s disease will not trap me in a world of negativity and fear. I will use my experiences to elicit hope, strength, love and acceptance. I will support my fellow patients and encourage them to continue to follow their dreams. I will strive for the best in life. I will enjoy the little moments and laugh in the face of anxiety. My life will continue to be filled with joy and delight. I will be proud of every milestone I reach, no matter how long it may take me. I will celebrate every victory over this autoimmune disease. I have and will always have a tenacity to reach my goals and overcome any obstacle.

I have Crohn’s; it does not have me.

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When I Decided to Love the Scars From My Crohn's Disease

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Your body is a temple. It is yours to adorn, worship and protect.

And lately, my temple feels like a rundown shanty. During my journey, I’ve racked up my share of scars, poke marks, bruises, iron stains, stretch marks, moon faces, and bald spots. I’ve dropped pounds like bad boyfriends and regained them faster than I can blink. My body has had a traumatic five years with no end in sight. Crohn’s disease has been a nasty case of termites that my temple just can’t shake. It’s demolished the drywall and ruined the plumbing, no pun intended. With each ding, my team of doctors and I team up to do our own styles of repair and renovation. Each “renovation” has almost always been met with a new problem. I finally have that hourglass figure, and Crohn’s gives me a permanent ileostomy bag with a swollen right side. I receive a compliment on my porcelain skin, and my iron infusion infiltrates and leaves a nasty stain forever inked on my forearm. My surgeon completes my colectomy with tiny lacroscopic sites, and the pain medication makes me so violently ill, I tear my sites and end up with big, red scars.

For years, my body has been under siege by the fiery tyrant known as a faulty immune system. My life has been out of my control and at the mercy of whatever treatment we’re hoping will work. Tests and medications, while temporary, can sometimes add to the list of scars that I love to make up crazy stories for. There are days nurses can place an IV within seconds without leaving a mark, but more often than not, I can guarantee I’ll be poked and bruised handfuls of times before they wheel in the ultrasound machine. This has been especially true the past few weeks. My arm has been a lovely shade of bluish purple, courtesy of far too many blown IVs or rolling veins. And thanks to that faulty immune system and slow healing process, they’ve hung around for quite some time. On top of my battered arm, mystery bruises have taken up residence all over my legs. I look like I’ve survived a few rounds against Randy Couture!

These uncontrollable scars remind me that my vanity is alive and kicking. I take the extra effort to do my hair and hide my dark circles, even if it means I’ll need to push back the outing and take a nap. I berate each selfie before ultimately deleting it and trying a new pose, angle, or giving up altogether. I do my own version of Jazzercise in the dressing room to make sure the potential outfit covers my bag. Looking “normal” is a painstaking process that requires much more thought than usual. It takes a lot of camouflage to mask the reminders of my battles.

Now, please, don’t get me wrong. I am proud that each scar shows my will to survive and fight for a better life. But I don’t always want them to be on display for the world. Some days there a reminder that what is supposed to help me heal can take its own toll on my body. There will always be scars and physical signs of my “invisible illness” that I can’t avoid. There will always be storm damage or plumbing problems or missing shingles in my temple. But I am a pretty great architect.

I can’t avoid the damage to my sacred home, but I can always adorn it to not only show the best me, but incorporate the cracks and dings into my style. When I was a kid, I was a pretty big tomboy. I knew nothing about hair and makeup and fashion. But with determination and good ol’ Pinterest, I’m learning quite a lot! With the need to hide bald spots, I’ve become pretty great at styling my own hair. It’s even made me realize that hair is just hair, it’ll grow back, so take a chance! Chop it all off, dye it purple, try out a perm. While my closet may be full of revolving sizes, I’ve developed my own perfect mixture of comfort and country chic. My jeans may be stretchy, but they allow me to get through the day without my ever-bloating belly causing me hassles. After I had my colon removed, I had a purple one (the punctuation mark) tattooed on my wrist. It was my way of reminding myself of how strong I could be and that Crohn’s can’t take anything away from me without my consent. It’s a great conversation starter!

becki parker

I’ve always been embarrassed my these little scars I’ve developed on my nose. After much thought, many discussions, and backing out a few times, my temple is now the proud owner of a new door knocker: a pretty little nose ring. I can’t erase the damage, but I can accept it by making it my kind of beautiful. I can’t avoid the scars that are going to happen to me, but I can learn to love them in my own way. If that way means tattoos, piercings or Prince purple hair, so be it. This is my home for the next 60 or so years, and I deserve to do whatever I need to love it.

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When I Didn't Think I Deserved Compliments About How I Was Handling My Disease

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Resilience. Merriam-Webster defines resilience as “the ability of something to return to its original shape after it has been pulled, stretched, pressed, bent.”

Every time I tell someone I have Crohn’s disease, their immediate response is “I’m so sorry, that must be so hard,” almost always to be followed by, “You are so strong.” The first few months (years?) after diagnosis, I always chuckled to myself when I heard that. Strong? All I do is put up with persistently annoying pain and an abundance of doctor’s appointments. Five doctors later, I still leave most appointments answerless and discouraged. I can’t remember the last time I was given a straight answer from my doctor due to the inconsistent nature of Crohn’s disease. This illness is a long and seemingly endless battle. A battle between myself and the disease, but also with my medications, my immune system, my doctors and my mind. What seems like routine discomfort and procedures still cause an awful lot of pain.

Over time, I learned that many people had the wrong idea of my disease, since it is an incredibly individualized illness and every patient is different. They had the wrong idea about me, my illness, and my treatment — and that’s OK. However, because of this, I discredited everyone’s statements in regards to it. I ignored their words of encouragement because I didn’t think I deserved them.

Today, after falling apart and pulling myself back together so many times since my diagnosis, I’ve realized they were right. I excel through so much pain and struggle that many of my peers don’t experience. School can get difficult to balance, work can get difficult to balance, even relationships can get difficult to balance, but I am strong. Please, remember you are strong, too.

Resilience.

The ability of something to return to its original shape after it has been pulled, stretched, pressed, bent. I have been pulled, stretched, pressed, bent, and I move forward.

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