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The 6 Phases of a Chronic Illness

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If everything happens for a reason, I am way overdue for an explanation. For years I have struggled with understanding why I was given a disease. In the beginning, I went through the common phase of denial, pretty much rejecting the idea I had anything wrong with me. That didn’t work out very well because it is hard to deny you’re in rough shape when you’ve been in and out of the hospital for a few months, taking fistfuls of medications daily.

Next I moved into the isolation phase. This stage was particularly damaging to my mental health because I went months without talking to anyone unless it was out of necessity. At this time I was in high school and spent all of my time studying or researching Crohn’s disease and related topics on the internet. I even pushed my family away; I wasn’t myself… I was having trouble figuring out who myself even was.

I never dealt with a stage of anger because my feelings mostly manifested as sadness. In general, I do not get angry but rather upset. Instead of feeling mad about my situation, I would just feel sad, revert back into my safe space with limited social interaction, and there began the vicious cycle. Because I am very reserved, I never like for anyone to know I am suffering. My way of dealing with pain, emotional or physical, is to handle it quietly on my own.

When I finally accepted my disease as a reality, I learned to cut myself some slack. I am a perfectionist, which makes it difficult to concede to the idea that because of my disease, things will never be exactly perfect. With support of my family, a lot of soul searching and my ability to find the good in things, I was finally able to stop punishing myself for something out of my control.

The next phase, which I could coin as “turning lemons into lemonade,” is where I embraced myself for who I was, disease and all. I am good at a lot of things and have great sources of joy in my life. Who cares if I have a disease? I started sharing about my health more openly and making jokes about my disease to lighten the mood during sad times. Oh, I have to leave family vacation early because my leg is so swollen from erythema nodosum that I can’t walk? At least that will be a great story to tell of my sister frantically pushing me in a wheelchair through the airport. I even wrote a manuscript about my journey with Crohn’s disease, which really helped me to process what had happened and reflect on the positive that has come out of my negative experiences.

I am now patiently waiting for the reason why this happened to me. The best part about this phase is that I am content in it. It is my sincerest hope that the reason life has thrown me such a big curve ball is to allow me to help others in my situation. Even better, I hope I can help others that aren’t in my situation to understand what it’s like to have your life dictated by something out of your control. My life isn’t easy, but having something so huge to deal with, such as a disease, has made everything else seem conquerable. I can handle what I go through because I choose to do so. I have Crohn’s disease, Crohn’s disease does not have me.

The Mighty is asking the following: Coin a term to describe a symptom, characteristic, aspect, etc., of your diagnosis. Then, explain what that experience feels like for you. Check out our Submit a Story page for more about our submission guidelines.

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Why I Don't Always Do What's 'Good' for My Illness

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I spend every day controlling every minute detail of my life. To call me a control freak is an understatement. Each morning, I take a shower, brush my teeth, then take my morning handful of meds. I stop eating before I’m full. If I want to savor the occasional soda, I open it and leave it out until it’s flat, but not long enough that the syrup settles.

Now, I don’t do these things because I have a problem with control. Trust me, self control is not my forte. I do all of this to maintain a very sensitive homeostasis. If I get out of the shower and head straight for my meds, I’ll be nauseous before I’m fully dressed. Drink that fresh soda? I’m down for the count with a bloated belly. Forget about enjoying a full plate of delicious food. I’ll be in a Tramadol-induced stupor for the rest of the day, fighting the bull tearing through my guts. Crohn’s disease has introduced me to a life of schedules, rituals and monotony. I know the consequences and avoid them like a bitter ex-boyfriend. And I hate it.

I hate the schedule. I hate the fear of diverting from it. I hate the constant reminder of consequences and punishments. I want to enjoy sugar in my tea. I want to eat when I want, not when I know I should. I want to sit with my girlfriends and eat heaps of ice cream. I want these things so badly, but I know the hell I will have to pay.

Some days, I decide I can’t live in that fear. Some days, I make a choice that is good for my soul, rather than what’s good for my body. I eat a little more. I push myself a little harder. I do as the Romans do, so to say. I can enjoy the company of friends over an overflowing dinner table. I can eat the buttery, crispy popcorn I used to love as a kid. Will there be a price to pay later? Yes. But that’s OK.

I survive by waking a feather-thin line, juggling so many pins that can never touch the ground. But sometimes, all I’m doing is surviving. I miss out on the “living.” I miss out on the laughter and indulgence and joy. And those three intangible things are the best form of medicine for me. I need to partake in the joys of life every now and again, even if it’s against better judgement. I also know this can throw you for a loop.

As my loved ones, you run around with a safety net, trying to catch me if I falter. You live this life right along with me and know my schedule better than I do sometimes. I can see your raised eyebrow as I pop a baby carrot in my mouth. I can hear you telling me we can “leave any time.” I see your care and concern, but please understand: Some days are for me. I promise, tomorrow we’ll go back to the shower-teeth-meds routine. I’ll eat the overcooked veggies… Tomorrow. I’ll watch my sugar intake later. But today, my soul needs this. Today, we are living.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

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Ask Yourself This Question If You Worry That Your Life Revolves Around Your Illness

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“You are not your disease.”

That’s something people like to say when you’re sick. And it’s true! It’s so true. You are not your disease. A diagnosis does not define your character. But sometimes when people say “you are not your disease,” what they really mean is “Please stop talking about your disease as it is making me uncomfortable and I would like to talk about more pleasant matters, like what happened last night on ‘The Bachelorette.’”

I am not my disease. I know this. But my disease does inform a lot of the things I do and feel, because of course. When you’re in pain or discomfort on a daily basis, it’s going to inform parts of you. When you can’t socialize with your friends because you’re having a terrible fatigue day, it’s going to affect you. Accepting that goes a long way toward stabilizing your mental health. But that’s all the disease is — a part of me. It defines me in the way that all of the other parts define me, both good and bad.

And in a flare like the present one, I do sometimes worry that my life revolves around my illness. My planner is full of doctor’s appointments, infusions and support groups. My social media posts look like the diary of a grandma who really likes to Instagram. I don’t have exciting weekend plans to contribute at the water cooler — just maybe a story about the movie I watched this weekend (which was ‘Beauty and the Beast,’ if you were wondering. It really holds up).

So today I got to thinking — Does your life center too much around your illness?  What’s your identity these days, aside from ‘sick girl?’ And here’s what I came up with. These are all (or some) of the things, aside from a Crohn’s disease diagnosis, that make me “me.”

I am a writer. This is central to my character and humanity. Even when I can’t get my life together long enough to be working on a legitimate project with any sort of discipline, I am always writing bits and pieces and notes and letters and blogs and first acts of plays I will never finish.

I am a cat mom. I have embraced cat-lady-dom in full force with my little Russian Blue, Alfie, and my roommate’s cat, Tiny. They make my days so much more adorable and sunshiney and even writing this makes me want to devolve into a pile of baby-talking, cat-toy-buying mush.

I am a compulsive reader. More detrimentally to my paycheck, I am a compulsive book-buyer. Everything from classics to modern lit to young adult fiction to beach reads to memoirs — I will read it. Bookstores and libraries house some of my favorite memories and generally make me feel safe.

I am a Taylor Swift super-fan. I know every word of every song by heart. Last summer I spent way too much of my disposable income to see her two nights in a row in Chicago. I grew up with her songs, and they will always hold a special place in my heart. I once had a Taylor Swift themed birthday party in which everyone was forcefully encouraged to dress up like her. She liked a picture of my birthday cake on Tumblr and I cried.

I am a political junkie. I am a lifelong Democrat who watches CNN for fun. I have a favorite political analyst (her name is Donna Brazile and she loves a sassy jacket). #ImWithHer, and I’ve got the T-shirt and button to prove it.

I’m a comedian, in whatever way you would like to take that. I have dabbled in every form of making people laugh, from stand up to web series to sketch writing and beyond. Making other people happy makes me happy, and making them laugh is the best way I know how to do that. (There is also, undeniably, a power aspect, as I am probably a tiny dictator of fun.)

I am a volunteer. I like to give time and effort to a cause. As a kid, this took the form of community service clubs and volunteer hours and the like. Now I like to support the causes of others, speak up about issues that mean something to me, and raise money for cool organizations I feel strongly about (like the Crohn’s and Colitis Foundation of America.)

I am a friend. I will give you advice when you think you want to dump your boyfriend. I will make you a sad songs mixtape when you do. I will mail you a happy gift when you’re stressed, or when you’ve accomplished something awesome. I will support your startups, your side hustles, your stories and your art. I will cheer you on forever. And even when I’m too sick to make it to your party, I will send you unending Snapchats of the aforementioned cat children (jury is still out on if this makes me a good friend or an annoying one, but hey.)

So that’s me. Sick girl, funny girl, obsessed-with-pop music and shirts with cats on them girl. If you’re chronically ill, I highly recommend this little activity of writing down who you are outside of your illness. Sometimes we all need a reminder that we don’t have to be just one thing, and we don’t have to fit into neat little boxes. I have a lot of messy, disorganized boxes, and those are pretty great as well.

The Mighty is asking its readers the following: Share with us the moment, if you’ve had it, where you knew everything was going to be OK. Check out our Submit a Story page for more about our submission guidelines.

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The 4 Superpowers of a Crohn's Disease Warrior

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Every superhero has their obstacle to overcome. People like Steve Rogers and Bruce Banner have backgrounds depicting their own struggles with their health. These were two men, one sick and small, the other overworked and riddled with anxiety. Their experiences lead them to become the heroes we know today, Captain America and The Hulk. And Hawkeye is deaf. Did that stop any of them from fighting for justice? Did that stop any of them from living their lives? Not a chance.

Chronic illness warriors are a part of a real-life league of superheroes. They wake up every day and battle until their head hits the pillow at night. I know for Crohn’s disease, sometimes it feels like I’m fighting a villain lurking in the shadows. The vicious “Immuno-Miscreant” plots its takedown of my positive outlook, strong will and unwavering courage. But we never let this menace take us down. We may falter, we may tire, but we never give up. Crohn’s fighters take the punch in the gut and hit back 10 times harder. Our long list of superpowers aides in our everyday victories. Just like Superman’s Clark Kent, you would never guess they are brave warriors when passing them on the street. But hidden under their brilliant smiles and intrepid attitude lays a valiant hero. Some of their powers are envied by millions. Let’s take a quick peek at some of these powers, shall we?

1. Superhuman endurance 

Crohn’s disease fighters have an unending reservoir of strength. No matter how worn down they are, they continue on not only fighting their own body, but tackling everyday challenges. They are parents, employees, friends and spouses. They manage all the responsibilities that come with being a functioning part of society on top of remaining victorious over their illness. They get out of bed every morning, don their invisible cape, and take on the world and then some.

2. The ability to locate all restrooms within a two-mile radius 

Let’s face it, finding the closest restroom is always top priority when in a new environment. I can tell you from experience, I am a champ at finding the infamous stick figure woman anywhere! Our super navigation skills allow us to locate the restroom and the best route to it. Ever need to find a bathroom quickly? Ask your inflammatory bowel disease (IBD) superhero friend.

3. The power to clear a room 

Pretty self-explanatory. Many of us are gifted with a toxic backside that can take down any bad guy! Stuck in a conversation that’s dragging on? Bored out of your gourd on a blind date? Let that noxious air horn blast and watch your opponents disappear.

4. Absolute resilience 

“Crohnie” superheroes are best known for their ability to bounce back. They may fall, but they don’t stay down for long. We don’t let bad news, breathtaking pain, or extreme fatigue keep us down. It’s just a bad day, and tomorrow we know we will be better. We can and have taken a beating!

Crohn’s disease patients are some of the strongest people I have met. Even I wasn’t aware just how much my life would change and how strong I could actually be. We are amazing creatures that can face adversity and do it all with a demeanor that can inspire thousands. We can take the pain, shame and embarrassment and turn it into the best time to advocate and educate others. Some people admire the heroes dressed in capes and tights, but my heroes will and will continue to be those that fight their own demons, their own body, each and every day.

The Mighty is asking the following: Coin a term to describe a symptom, characteristic, aspect, etc., of your diagnosis. Then, explain what that experience feels like for you. Check out our Submit a Story page for more about our submission guidelines.

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A Letter to Myself at the Beginning of My Journey With Crohn's

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Imagine cleaning your room one day to find a mysterious letter from your future self. Would you dare open it? Would you take your own advice? I’ve always wished “future me” would send me a quick note to encourage me in the right direction, warn me of heartbreak or confirm I made the right decision.

If you were given the chance to chat with the old you, would you? Would you warn them about that bad breakup? Admit their favorite jeans are a hideous excuse for pants?

In 2013, I would have given my right arm for a mysterious note from a future self. I had no idea my life would take an unexpected turn when I became seriously ill before being diagnosed with Crohn’s disease. I’ve heard nearly a million pieces of advice and suggestions from other chronic illness warriors, but I always wondered what I would tell me. Well, this week I sat down and figured out just what I would tell the 2013 version of me.

Hi Becki,

It’s 2016 me — well, you. Crazy, I know! Right now, you’re buckled in, and the biggest, scariest roller coaster of your life is about to take off. You’re going to scream, cry and laugh more than you can even believe. But don’t worry, I’m here to give you pointers on how to get through this ride in one piece — well, with most of your pieces.

As this year began, you started to experience some less-than-glamorous issues. The bathroom isn’t the most fun place to hang out, I know. It’s hard to explain why you’re constantly going. And the poor, poor person that has to use it after you? Bless their soul.

“It’s so embarrassing!” you say. Well, get used to it, Buttercup: this is the easy part. Now I know you think it’s just a little stress. It’s not! Go to the doctor ASAP! They’ve seen and heard worse. Be honest and ask for help. When you finally do get help, do some research on the tests they are going to run. I promise, they sound scarier than they actually are. Never, and I repeat, never eat your favorite food before a colonoscopy prep and, no matter how drugged up you are afterward, you still hate In-N-Out Burger.

And get used to people looking at your butt. Not like “Dang, those jeans look good”… more of “When did that hemorrhoid appear?” You’re going to get really used to your rear end being the piece of you everyone wants to see/scope/talk about. You’ll become shameless real quick and poop jokes suddenly become the funniest thing in the world.The author, Becki Parker.

You’ll meet more members of the medical profession than you’ll be able to remember. They all have different methods, but their goal should be the same: to help you heal and function to the best of your ability. You’ll meet nurses that love you and some that you wish took a different career path. If you feel like you’re being mistreated or your needs are not being met, leave. Now. Do your own research and interview a new doctor. Learn new adjectives for how your guts hurt. This will help doctors and nurses greatly. If something looks or feels off, tell someone. Go to the ER. Who cares if they saw you last week? It’s perfectly okay to go back and ask for help. Roughing it out does nothing but harm. The nurses will learn your name and your life story, and they’ll become some of your closest confidants. They’ll be able to help the doctors track how your disease is progressing. Even the doctors will become your close friends and visit you during your many hospital stays. Remember to be kind to these brave souls that not only work crazy hours, but put up with many cranky and sick people, all with a smile on their faces.

Get used to the taste of broth. And stop being a snob about Jell-O. Just suck it up and drink the damn food. Liquid diets are here to stay — deal with it. You won’t like many of the tests, foods, needles or being cooped up, but that’s life now.

You’ll see people you thought were your friends disappear. You’ll try and try to keep those relationships alive, but sometimes you have to learn when you stop CPR and call it. You’re 21 and you’ve little to nothing in common with them anymore. And that’s just fine. And if you have to cancel plans, that’s OK too. Don’t push yourself; if you do, you’ll pay the price later.

It’s normal to outgrow people. It’s normal for them to not understand or learn with you. Adapt to your situation and respectfully move on. Learn to adapt to your ever-changing scenario quickly. It’s no use fighting change. You’re never going to be “normal” or like the old you again.

And that’s the bright side of this whole journey. You’re changing, you’re “abnormal.” The majority of people will never know what you’ve learned. They’ll never have the strength and courage you have. You’re growing into this strong, intelligent fighter. Every day you strap on your boxing gloves and step into the ring with an opponent that never tires or weakens. That kind of endurance is admired far and wide. Your new independence allows you to be strong enough to do things on your own and take control of your life. You’re going to laugh more than you ever have. You’re going to appreciate things more than you ever have.

Some days you’ll wear the pain and fear like the rarest of gems. But some days, you’ll wear them like a “Warning: Toxic” sign. Either way, that’s a-OK. You’re allowed to have rough days, and you’re going to have rough days. There are going to be days that you don’t think you’ll make it through. There will be days you don’t want to make it through. But you will. And you will be a better you for it. Your friends will be truer, your love deeper, and your compassion stronger. These are things people would kill for. Be proud of them.

Like I said, this is going to be the craziest ride of your life. But we’ll make it through. You’ve got this, kid. Don’t ever doubt that.

Sincerely,

The 2016 badass Crohn’s warrior Becki

The Mighty is asking the following: Write a letter to yourself on the day of the diagnosis. Check out our Submit a Story page for more about our submission guidelines.

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The Struggle of Finding a Great Doctor If You Don't Know Where to Look

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If only there were a magical formula to find the right doctor for every patient! Much like slogging through the dating scene to find love, cutting through all the bad doctors to get to the good one is a struggle.

Looking back, there had been signs of Crohn’s disease in my life since I was a kid, but it wasn’t until I was finishing up my sophomore year of college that I knew something was really wrong. I was diagnosed in fall of my junior year and when I was told by my childhood pediatrician that I needed to find a gastroenterologist (GI), I simply called the first guy that showed up on Google. What a mistake.

In my defense, I was not feeling well and my metal shape was weakened by my condition. I was tired all the time and just not as cognitively sharp as I had been, so I didn’t put in the effort to find a good doctor, look up reviews online or take the time to call around and compare different GIs.

I paid dearly for my laziness and his ineptness. I got very sick, very quickly. When I came home for Christmas it was clear to my family that my doctor’s methods were not working, as I had lost 30 pounds in three months and was sleeping upwards of 16 hours a day. I was in no shape to do my homework on a new GI, but I lucked into the best care I could have asked for.

My new GI was thorough, caring, thorough and thorough. Where my previous GI had fallen short, she came through in every way. At this point, my intestine was 90 percent blocked, I had an abscess the size of a fruit and I had developed a fistula, so my only option to heal was surgery.

Losing control of my health to that extreme was a wake-up call, and since then I’ve taken a much more proactive stance on my health. It’s easy to believe that doctors are all good people with good intentions who care about their patients’ health. While I believe that’s true for the most part, I’ve learned the hard way that the only person who is going to make sure I’m getting the attention I need is me.

But ugh! That is so freakin’ hard to do! I don’t know about the rest of you, but I have a degree in broadcast journalism, which didn’t require me to take many classes on autoimmune disease (I believe the grand total of science classes I took in college is none). It’s hard to advocate or defend myself when I don’t know the ins and outs of what I’m advocating for or defending against. The good news is that I am fully prepared to stand in front of a camera and report on it after the fact.

So I lucked into finding a great GI, and when I graduated college I moved 30 miles away, a still doable if not desirable distance to cross for appointments. But the thing is, my body isn’t composed entirely of intestines (thank God) so I need doctors other than GIs to help take care of me. In my ideal world, I have a team of doctors who communicate amongst each other to ensure that I am healthy. Autoimmune disease is a b**** in that if I’ve got one, I’m probably going to get a few more. So that means finding doctors I trust in every facet of my health: primary care, GI, OB/GYN, dentist, rheumatologist, therapist, etc. But where do I even begin in making sure I’m getting the best health care when I’m not a health professional? In my amateur experience, there are two places to begin: word of mouth and the internet.

When I moved up to Los Angeles, I talked to some friends about their doctors and how they feel about them. This is a great way to get started. It opened my eyes to the different medical groups, practices and hospitals in my new home. The trick is finding doctors that are in my insurance network. Big thanks to the Affordable Care Act and a job with health benefits for keeping me insured.

Insurance companies make it very easy for me to find doctors that are in-network online. I can even enter a radius in which to search for doctors so I don’t have to drive too far. Since I moved up to LA this has been the primary way I begin my research for new doctors. It helps narrow down the field to my specific insurance, and from there I go to good old Google for reviews on each doctor. Nowadays Yelp is good for more than just assigning stars to the Thai takeout around the corner. Many doctors and practices appear there, and I find it’s a good way to gauge other people’s experience, while taking them with a grain of salt. There are other medically centered websites that focus on reviewing doctors, but I’ve found that fewer people take the time to rate on those sites.

From there, just jump in. It’s impossible to know what chemistry exists until you and your doctor meet in person. Of course, hopefully there’s not too much of a spark since you’re looking for a healthcare professional, but hey! If there’s more there, good on you for landing a doctor. If I’ve learned anything from “Grey’s Anatomy” they’re probably very smart, good-looking and prone to drama.

It’s taken me almost four years to reach a point where I am satisfied overall with my healthcare. I have definitely stuck with some doctors too long (I’m looking at you, old dentist!), but at the end of the day, after all the research and Yelp reviews, you just have to try the doctor out for yourself. Sometimes the care I received seemed good enough at the time, and it wasn’t until I went to someone new that I realized what I was missing out on. As my mom said, “Now that you’re happy with your doctors, it’s time to move and find new ones.”

P.S. I don’t suggest looking for doctors from your balcony. It will be a very slow route to finding the health care you need.

Follow this journey on Cool With Crohn’s.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

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