“Raise your hand if you’ve ever had an IV.”…
I nonchalantly look around the room and notice I’m one of two women in the newborn class at the hospital who raises her hand. Then, I start thinking…about how scary it would be for all the completely healthy people who’ve never stepped foot in a hospital as the patient, who’ve never had pain medication or surgery, who’ve never experienced a hospital stay with their husband. That’s when it hits—battling Crohn’s disease for more than 11 years has prepped me for this journey and given me confidence going into delivery.
Here are my top 10 reasons why:
10. Packing the hospital bag—So many people stress over what to bring and what they’ll need. Normally with a flare, I’m bent over in pain rushing to throw together loose odds and ends in a bag, on a whim, with no rhyme or reason. You know what you’ll actually use (comfy pjs without a waistband, a phone charger, face wipes that allow you to wash your face without getting up, your own shampoo, etc.)—and what you’ll never touch.
9. Dealing with frequent bathroom breaks—In the first and third trimester you constantly need to take bathroom breaks. As a Crohnie, you’re used to scoping out where the bathrooms are in public places and know what it’s like to be woken up in the middle of the night when you need to use the bathroom.
8. Your condition is not invisible—Once you start showing—complete strangers, friends and family alike treat you like you’re a VIP. Everyone wants to help you, hold doors for you, give their seat up for you, bend over for you, help you reach for items at the store, you name it. When you’re in pain or uncomfortable, there’s no need to suffer in silence because everyone loves helping out a preggo woman. Whereas when you’re struggling with Crohn’s symptoms you look healthy to bystanders and can cover up symptoms if you want to.
7. Stretchy pants—Forget the days of having to worry about your skinny jeans or that belted dress restricting your stomach and giving you stomach pains, living in stretchy maternity leggings and dresses for months on end is heavenly. I’m keeping those bad boys post-baby to wear when my Crohn’s acts up!
6. Handling diet restrictions—If you’ve encountered a Crohn’s flare you expect a nutritionist at the hospital or at your GI’s office to talk with you about what to avoid and what you can eat. You’re used to a list of foods (fruits, veggies, anything fried, caffeine, nuts, popcorn, etc.) that hang over your head as possible kick-starters for inflammation. I swear since my Crohn’s diagnosis if I even try to have movie theater popcorn, I get the same look from my family as I would if I asked for an amaretto stone sour while pregnant! When you find out you’re pregnant and need to refrain from sushi, large doses of caffeine, lunch meat, alcohol, unpasteurized cheeses, etc…it’s a walk in the park because you’re used to having willpower when it comes to refraining from certain foods and drinks, even if they are your favorite.
5. Living with pain and discomfort—The back, hip, and rib pain that comes along with pregnancy as your joints and ligaments loosen up from the relaxin hormone and prepare for childbirth is eerily similar to what it feels like to be on 40-60 mg. of prednisone. As someone with chronic illness you’re used to tough days and not feeling 100 percent.
4. Needles are no big deal—From IVs, to blood draws, giving yourself Humira injections, etc…you become desensitized to needles and don’t stress over it. While an epidural or spinal block sounds daunting—it’s just another shot to you. You know how it feels to get pain medication and how your body responds to certain drugs. For instance, I know I’m not a fan of Morphine, and will ask for some Dilaudid and Zofran after my C-section if that’s the route I end up going.
3. Previous abdominal surgery—According to the Crohn’s and Colitis Foundation, 75 percent of Crohn’s patients will require surgery at some point in their life. If you’re like me—you’ve had a bowel resection and already have the “C-section scar,” you know what it’s like to heal from abdominal surgery. My doctors told me healing from a C-section will be much easier than the removal of 18 inches of intestine, along with my appendix. It’s sounding like I’ll be having a scheduled C-section at 39 weeks. If I hadn’t gone through my surgery in 2015, I feel as though I’d be very anxious and apprehensive about going under the knife to bring my baby into the world.
2. Comfort with your caretakers—Between multiple hospital stays with my husband by my side, along with my family and my in-laws, I know who I can count on and how those closest to me respond during health situations. During the newborn classes the instructor mentioned how many husbands have to stand in the corner of the room during delivery or can’t witness a C-section, many fainting or passing out…I’m comforted by the fact that my husband is my rock and his support, compassion and patience always gets me through everything. I know he’ll be holding my hand and keeping my eye on the prize til our son is born.
1. Going to the hospital for good—This is the best part of all!! Whether you were just diagnosed or if you’re a chronic illness vet, this is one of the few times in life when going to the hospital is for a GREAT reason. Whatever pain you endure is temporary and whatever recovery is needed is all a result of bringing a LIFE into this world—a child that you get to love and adore, a new member of your family. This is one of the few times your pain has purpose.

Photo Courtesy: J. Elizabeth Photography

I recently came across an article on The Mighty, entitled “What it’s like to be diagnosed with a chronic illness in your 20s.” I was immediately drawn to the story since I too was diagnosed with Crohn’s disease when I was 21-years-old. The author, Catherine Emerson, who is 21, inspired me to reflect on that time in my life and also think about how my mindset and identity has changed over the last 11.5 years. It’s my hope that my words will bring people in her shoes solace in knowing that the best is yet to come.

When you’re a 21-year-old good health is expected. Between work, school and socializing you oftentimes feel invincible to anything going wrong. But when the tides suddenly change and you’re blindsided and told you have a lifelong illness, it can feel like you’re drowning in a state of unknown.

As if the prednisone giving you insomnia wasn’t enough to get your first flare up in check; that initial diagnosis leaves you up all night, gasping for air. There is so much fear and so much helplessness. When you’re told you have Crohn’s at age 21 it feels like that’s your newfound identity. “Hi, I’m Natalie. I have Crohn’s.” You begin to think and feel that everyone in your inner circle labels you that way and looks at you with sympathetic eyes as you take 22 pills a day to get by.

It’s difficult to go from being a completely healthy person… to your family staring at you during dinner—wondering if you should be eating that, or sighing with sadness when you run to the bathroom mid-meal, constantly asking you “how are you feeling?” It got to the point where I had to tell people to stop asking me that question.

During the time of my diagnosis I was actively searching for my first TV job—I went from being excited about reporting on camera to doing anything to dodge the mirror. I have very few pictures of myself from this time in my life because I felt so hideous and self-conscious. In the photo at the top of the article, I had been sick for weeks and struggled to attend a baseball game with my brother. I didn’t know what was wrong, for months I was unable to eat without pain and had fevers topping 104 degrees. The photos to the left are what months of steroids and medication caused post-diagnosis. While Crohn’s is an invisible illness for the most part—when you’re going through a flare, it begins to affect your outward appearance as well, whether it’s drastic weight loss when you’re too sick to eat anything other than liquids or weight gain and water retention from treatment. Finding that balance initially is so challenging.

In her article Catherine talks about how as a 21-year-old she was “excited by the prospect of fun and exciting experiences” and that when her health started to decline that her world was “completely shattered.” I can relate and I know the feeling—but, to all the Catherines out there—who’ve been told they have a chronic illness in their 20s, I’m here to tell you that while there will always be difficult days along the way that may break you temporarily, you will learn so much about yourself and so much about your body that it will be an ongoing experience that empowers you and only makes you stronger.

Now—as a 33 year old, married woman who is expecting her first child in less than six weeks—I can tell you firsthand—there are people out there who will love you unconditionally and embrace you for who you are. Your future is bright and you can experience all of life’s exciting milestones like the rest of society. Your disease will enable you to see people’s true colors and character in a way you never knew possible. It actually makes finding a spouse easier because you can see who has true heart. Your perspective about life and challenges along the way will shift. One day you’ll wake up and feel like despite the never-ending worry and wonder that looms with Crohn’s—you’ll come to a place where you feel confident that you are in control. Rather than your identity—your disease is a part of what makes you unique.

What felt like a scarlet letter in my 20s, now feels like a badge of honor in my 30s. Instead of shying away from admitting I have an illness, I’ve found it more helpful to be vocal and let others know that part of my life story. Living with Crohn’s doesn’t make you weak, it makes you tough—mentally, emotionally and physically.

Here are 5 tips for overcoming the initial shock of a chronic illness diagnosis.

1. Be patient with yourself and those around you.

Give yourself time to heal and process the news. Don’t blame anyone or anything for your diagnosis. Instead, tell yourself that God gives his toughest lessons to his greatest teachers.

2. Don’t suppress your emotions.

If you need to cry, let it out. No apologies needed. Writing in a journal is cathartic. If someone is negative or makes you feel less of person because of your disease, remove them from your inner circle. Focus on the positive people and experiences in your life.

3. Network and find people who are living your same reality.

The most helpful tool you’ll find is socializing, whether it’s in person or online with those who live with your same disease. As supportive as friends and family want to be—there is no way for someone who doesn’t have Crohn’s to truly grasp what it feels like. Use those friendships to lift your spirits; you’ll feel an instant connection with those who can relate.

4. Celebrate the small victories.

While the diagnosis will stop you in your tracks and change your daily life—whether it’s diet, sleep or exercise—give yourself credit for the milestones, even if they seem minuscule. When I was first diagnosed I went eight months without eating a fresh fruit or vegetable. To this day—I can still remember having a salad for the first time—and crying in the middle of a restaurant with my family… because I was so happy.

5. Don’t focus on the long term—focus on the now.

Thinking about having a disease for the rest of your life is overwhelming. There’s no telling what trials and tribulations are ahead, but in reality—that’s the case for everyone. Focus on each day and don’t let yourself get caught up in the worry of when your next flare up will be. You’ve encountered one before and overcome and you’ll do it again.

Catherine closes out her article by saying, “Please think before you make comments, and be understanding of the demons people like me battle every day. I am learning to live and love myself again, but it will take time and a hell of a lot of support.”

For those who do not have a chronic illness—please take Catherine’s words to heart and know that even on “feel good” days, there is a constant inner dialogue going on in the minds of Crohn’s patients. It starts the minute you wake up—and doesn’t stop. The best thing you can do is show compassion to all, because you never know what battles a person is fighting from within—if you only judge from the outside.

In the spirit of Valentine’s Day I thought it would be fitting to share my gratitude for the man who I’m lucky to call my husband and best friend. The man who’s stood by my side through so much—whether it was holding my hand for days on end as I laid in a hospital bed fighting a flare up…or stepping up throughout my pregnancy when I am too tired to take my socks off. Caregivers have a tough job. Of course it’s difficult to be the patient or the “sick one”…but, I think it’s the supporting cast who really deserve the credit.

As someone who’s battled chronic illness for nearly 12 years there are not enough words, cards or gestures to truly capture my heartfelt appreciation. I told my husband Bobby when we started dating that I had Crohn’s so that he’d have an out before he got too invested in getting to know me. Rather than run for the hills—he showed compassion and to this day constantly assures me that despite my struggles, I’m still a healthy person overall.

It’s the moments when I’ve been at my weakest that now shine as some of our best times as a couple. I can envision him resting his head on my bed in the ER, bent over in a chair for hours into the night…as I go through tests…never letting go of my hand or complaining. I think about when I’m NPO (not allowed anything by mouth) because of procedures and how he gently dipped sponges into a cup of water to wipe on my gums when I was thirsty. When I have trouble falling asleep now because of discomfort with the pregnancy I drift off by counting down from 200…something he taught me while fighting a flare in the middle of a dark hospital room years ago.

Now, as we gear up for the biggest adventure of our lives—becoming parents(!!!)… I’m comforted by  the fact that going into labor—whether I deliver vaginally or by c-section isn’t going to be so scary, because I’ll have my rock star teammate by my side through it all. This isn’t our first…and surely won’t be our last rodeo in the hospital. While I’m still anxious and nervous about delivery, it’s so comforting to know how he responds in medical situations. Bobby knows how to calm me down, he knows what to say, how to act, what to pack, the questions to ask, you name it. When he looks in my eyes when I’m going through something painful—we’re able to communicate in a way that makes it all ok.

I’ve said it before and I’ll say it again—your support network, your caregivers… are your lifeline. Make sure you express your gratitude and realize how lucky you are to have them by your side. There is no reason you should ever feel like you need to take on anything alone. Whether you’re the patient or not—help is out there for you as you navigate the unknown. The Crohn’s and Colitis Foundation of America (CCFA) offers an online support network for caretakers, too! Click here to learn more.

Bobby—you’re an amazing husband, partner in crime and best friend…I can’t even begin to imagine what a phenomenal dad you are going to be. It brings me such joy to know that our little guy will grow up with YOU as a role model. As we get into the 34^th week of pregnancy and get ready for our lives to change forever, I’m so glad I have you by my side for each and every experience. Having a man who “gets it” and never makes me feel guilty for my condition, gives me the confidence to know that while Crohn’s can be debilitating, it’s not going to break my spirit…but only make US, stronger.

Wishing everyone a super sweet Valentine’s Day and  a life shared with someone as wonderful as my Bobby! XO

Life is a constant roller coaster of highs and lows, unknowns and welcome surprises. We all come across experiences that shape us, struggles that challenge us and moments that define us. We meet people who completely change our world and our perspectives. These people and these moments are important to keep close in thought. When you’re battling something tough they can serve as great sources of inspiration to provide clarity and the knowingness that no matter how awful something may seem…it too shall pass.

Living with a chronic illness has taught me that while life is far from butterflies and rainbows, it’s a beautiful compilation of encounters that gear us up to take on whatever may come our way. Whether it’s fighting a flare up or grieving the death of a loved one, we are constantly reminded of how quickly our current state of affairs can change.

All the recent political jibber jabber, harsh words and hate plastered on social media and making headlines is extremely disheartening and disturbing. While we’re all entitled to our opinions and to say what’s on our minds—to me, it’s more important to focus on being a good person, celebrating the blessings in my life and doing all I can to make a difference in the lives of others. Physically being a good person will do a lot more good in this world than spouting off on a Facebook status. If each person who’s taken the time to craft a social media post about their political opinion used that energy to volunteer or even connect with someone face to face or on the phone, think about how much more productive that would be.

While your current situation may feel grim—think of how many people would give anything to live a day in your shoes. Before you open your mouth to speak or act…pause and think.

Think of the thousands of people waiting for the gift of life through organ donation… staring at the clock from their hospital beds…wondering when that perfect stranger will give them a second chance. Think about that the brave babies fighting for their lives in NICUs across the country and their parents who are wondering if they’ll ever get to see their child grow up. Think about all the people who wake up and receive chemo so they can fight another day. The list goes on and on.

When you’re the person who’s going through something difficult—rather than thinking ‘woe is me’ have faith and confidence in yourself and when you look in the mirror try and find the strength to smile. If life was perfect and none of us ever faced any sort of trials or tribulations—the best, most beautiful moments would never shine as bright.

Rather than suffer in silence, share your greatest fears and struggles with those close to you. Communicating and making people aware of your pain will help you, as you won’t have to take on your struggles alone. It’s cathartic to be open—support networks (friends and family) ebb and flow… sometimes you need the boost…other times you need to give it. Depend on that, trust in it and utilize it.

I write this article as I prepare to go visit a baby in the hospital who has completely altered my perspective on what it means to be strong. Baby Jade has spent every day of her life—nearly a year (she turns one Feb. 25)—within four walls of a hospital room. Witnessing her steadfast bravery after each surgery, procedure, test and setback…and that of her parents, has shown me just how fragile life is.  Despite the hardships and unfathomable scares, Jade and her parents remain focused on the future and determined to one day go home as a family. As a soon to be mom, I can’t begin to grasp what it’s like to be in their shoes, but they constantly show me and inspire me to take on all of life’s setbacks, challenges and disappointments with a positive attitude and an unwavering faith.

My challenge to you–embrace the dark days… as it makes the sun-filled ones even more promising and brighter.