A letter to my 21-year-old, newly diagnosed self: From 13 years in the future

This past week I turned 35. Birthdays for me are always a time of reflection on what was and excitement for what the future holds. Each year is so transformative, especially when it comes to how you handle and deal with chronic illness. natalie35bdayWhen I was diagnosed with Crohn’s disease at age 21, a month before my 22nd birthday—life had so many unknowns. I bottled up a lot of fears about how my life story would unfold and if I would be able to accomplish the hopes and dreams I had thought were a given.

This week, a letter to my 21-year-old, newly diagnosed self—from my current 35-year-old self. With time and experience, comes perspective. Perspective that I wish I had back when my world came crashing down upon me after learning I would forever have a disease for which there is no cure.

For those embarking on this journey—whether you’re the patient or the parent—you may feel like you are drowning in worry of what is to come with your lives. I hope my words will bring you comfort and the knowingness that you have a lot of life to live, and you will do just that.

Dear Natalie (age 21),

I can still see you looking at yourself in the mirror—feeling like a skeleton of who you used to be. Cheeks sunken in, eyes tired, arms covered with bright purple bruises from all the IV sticks, pokes and prods. You’re sitting up in bed, popping big bubbles with your chewing gum, trying to deal with the insomnia and ravenous appetite that comes along with taking 60 mg of prednisone. You’re thinking about how easy and simplistic life was a matter of weeks ago, graduating from college—hoping to land your first television gig as a news reporter.

Everything feels like it’s in shambles. You are perplexed about why you were dealt this hand of cards and why the rug was completely pulled out from under you, when just a matter of months ago you had the world by the tail.

Here’s what I want you to know. Nothing comes before your health. No job, no relationship, no friendship. There are going to be difficult times ahead as you figure out which people in your life genuinely want to be by your side, and which are only around for the fun, healthy times. feb13blogmainphotoIt’s a path that will bring you heartache. Significant others will let you down—you’ll be disheartened when they fail to show up when you need them most…but, then it will happen. You will meet the person who was meant to fight this fight beside you. You’ll know. You’ll see how that person loves you unconditionally and even more so, because of your illness. They will see you as so much more—see yourself the way they see you. Not some sick person. A person who has a sickness that is part of them, but far from all of them.

Professionally—you may need to take a different path that better suits your needs. natalienews2Don’t allow this illness to make you think you aren’t capable—because you are. You will surprise yourself, if you continue to be positive and find alternative ways to make your dreams become your reality. I know you’re sitting there with your huge spreadsheet of 200 U.S. cities, wondering which TV station you’ll be able to work at…and if your journalism career will ever happen. Looking back—I’m so proud of you for continuing that job search amidst your very first flare. Looking for jobs across the country, as you swallowed 22 pills a day, grappled with a chronic illness diagnosis and dealt with all the side effects and pain that is Crohn’s. Work ethic and attitude will take you far with this disease. IMG_4248You will shine under those bright studio lights.

Stop with the timelines and deadlines in your mind. You don’t need to be married and have kids by age 30. I know you think you want that, but trust in God’s plan for you and know that your future will fall into place the way it is meant to. Don’t rush yourself. Don’t feel less than just because all your friends seem to be checking off those boxes. Your time will come.

When you attend doctor appointments and when you are hospitalized be vocal. Be your own best advocate. Don’t be intimidated by the people in white coats. You know your body better than anybody else. It’s ok to cry. It’s ok to be angry. It’s ok to lash out. Have patience with yourself as you navigate your new normal and trust that the temporary hardships and hurt are just that, scary. The first of anything can be scary. FullSizeRenderThat first CT scan, that first colonoscopy, that first surgery, that first injection…it’s a lot to deal with. You’ll shake like a leaf and then as time goes on—you won’t bat an eye. You will find a strength within yourself that you never knew was there. You’ll be a seasoned warrior in no time.

What seems so foreign to you now, will soon be something you understand and can decipher immediately. Those symptoms—the pain, it’s all new now. In the future, you’ll have a good idea of what’s happening. What triggered it. How to help yourself. You won’t be as alarmed. You’ll know exactly what you need to do and when a hospital visit is a must.

I want you to know that everything is going to be alright. It’s going to be more than alright. You will thrive. You’ll beat the odds. You’ll land multiple TV gigs. You’ll fall in love. You’ll meet the one. You’ll be a mommy. IMG_6401You’ll do all these things. All with your sidekick—your enemy, but also your ally, Crohn’s. The one thing that really sets you apart. In the future you won’t keep your disease a secret, rather it will come up in conversations almost immediately, with a sense of confidence. A badge of honor. Yes, I have Crohn’s. Yes, it’s not ideal. But, yes…it’s made me sort of a bad ass. I’ve been through a lot. I haven’t backed down. And there’s so much life left to live.

You are not broken. You are not less than. This disease will take you on a journey you never imagined. Hold on tight, hang in there through all the scares and celebrate all the wonderful feel good days when your quality of life feels untouchable. And smile. Smile on the good days, smile through the bad days. Trust me. You got this. _F6B6137

Love yourself—everything that makes you, you—

Natalie, age 35

Feature photo credit: Coffee Geek

Finding strength through your IBD tribe

Back in the fall, I had the privilege of sharing the stage with a fellow IBD advocate in the St. Louis area during a Crohn’s and Colitis event. Her name is Kelli Young. Kelli has battled Crohn’s disease for 28 years. She’s a veteran to the game, and has incredible perspective about how IBD not only shapes our lives, but dictates the kind of people we become. This week—a guest post from Kelli about why finding your tribe—an empathetic support system—makes a world of difference.

It took over a year and a half of being prodded and poked in every orifice of my body to receive the diagnosis of Crohn’s. I received the devastating news eight days before entering my sophomore year in college. IMG_1076The excitement of knowing “I’m not a hypochondriac” was overshadowed by the fear of having a “poop disease”. You see, my first year of college, I became best friends with my Suite mate. Ironically, she too battles Crohn’s. I was 20 years old, diagnosed with a disease that had no cause and therefore no cure…how can that be? Why me? What am I going to do?  I didn’t even know how to swallow a pill. I was never the sick kid! Now, I had to take 24 pills a day, which sometimes would take me an entire hour to swallow one dose, throw up, re-swallow again. Three times a day. It was as if I had entered “hell”.IMG_1077

Six month after diagnosis, I came home from college for winter break.  Tipping the scale at a whopping 75 pounds, my body was too weak to undergo surgery. For 45 long days, I received all my nutrition through an IV. This was so my bowel could rest as I prepared for a colon resection. The surgery was my only hope for living a more productive life.

What I’ve learned after nearly 30 years with IBD

Fast forward nearly three decades—and through the years, I’ve been labeled as “the complicated” patient. I’ve undergone multiple surgeries which include: three colon resections, gall bladder removal, appendectomy, countless ERCP’s and fistula repair. Can’t forget the life-saving blood transfusion I needed after my colon ruptured, causing me to lose half my blood volume. I dealt with TPN (Total parenteral nutrition)/bowel rest for each of the three surgeries. 45 days was my longest duration on NPO(no food). 30 days was my longest hospital visit. For the last 28 years, my body has had medication dumped in it.

My generation was taught differently. IMG_1078Which made my journey with the disease a little different than today. I was raised to think “only the weak complain!”  “Someone always has it worse!”  “Suck it up butter cup”.  “If you want the job done right, do it yourself”. This made me look at the situation as this was “my” disease, “my” problem and I don’t want to make anyone worry about me or feel sorry for me!  I became a master at hiding the disease and a master at hiding the byproducts of the disease.

It has taken me decades to evolve. Six years ago, I realized, I had to create a better “village” for myself. And my voice was starting to be heard. I just wanted my peeps to treat me as an equal, no matter how many bowel movements I’ve had that day. And most importantly, yearning for support and compassion, not to be mistaken for pity or despair! During my evolution process, big sacrifices had to be made. As a mother of two, I had more than just myself to think about.

The power of transparency

Today, transparency has set me free. Free from the misconception that I’m “lazy”. Free from the labels placed on me because of my thin statured frame. Free from the worry of how others view me. And free to live my life.

Today, I am able to share my journey with an audience that might share a similar experience or with an audience that has a loved one with Crohn’s Disease. I share my story, with the hope of inspiring others and showing anything is possible.

My disease has made me who I am today. It has taught me that I am strong, determined, confident and secure. kelliI’m a proud mother to two amazing children. I carried and gave birth to both of them with zero complications. I’m a business owner of a successful insurance agency, which I established 4 years after diagnosis. I didn’t allow my disease to derail my professional aspirations. I’m an active mother and manage to find time to be a room mother and Girl Scout cookie manager.

As a patient advocate, I serve on the board of the MidAmerica Chapter of the Crohn’s and Colitis Foundation, in addition to other professional boards. I value the good days! I reflect on my bad days and listen when my body tells me to slow down and get rest.

My advice to you

If you’re newly diagnosed or in the thick of the battle, it’s important that you realize… “this is your normal”. Embrace it! Accept it! Own it! Speak about it!!  Get a “village” that gives you positive support, not to be mistaken for negative attention. If I can get thru this crazy game of life with Crohn’s disease, so can you!  Don’t let the disease define you.

While I know my journey will include the daily struggles from the disease, it no longer is my hidden secret. My village knows and loves me for me. They understand the disease and ask questions to understand it better. This is not just my “problem” any more. As we all patiently wait for a cure, it is important we speak up, join together and help one another.