Natalie Hayden

@natalie-sparacio | contributor
Natalie Hayden, 33, is a former TV news anchor living in St. Louis. Her mission in life is to be an advocate for those battling inflammatory bowel disease and to show that a chronic illness doesn’t have to dull your sparkle. Follow her journey on Lights Camera Crohn’s and on her Instagram account at @natalieannhayden.

Why Self-Love Is Important When You Live With Crohn's Disease

Self-love. Self-care. These phrases tend to be thrown around quite often these days. At times they just sound like trendy buzzwords. But, they are important topics nonetheless. Do you ever pause during your day-to-day routine and think about how you’re really doing – physically, psychologically and emotionally? When you live with a chronic illness like Crohn’s disease, taking time to honor all that you do to merely function and keep up with the general population is worth recognizing. It’s not easy to be in constant battle with your body. It’s a challenge to feel pain often. It’s exhausting to always have a worry and a wonder in the back of your mind about how you’re going to navigate and overcome the next hurdle or setback thrown your way. This is why self-love is so important. So, here’s my call of action to you. Rather than focus on all we’re unable to do or all that we struggle to do, it’s time we celebrate and recognize everything we can do. We are so much more than patients. We are people. It’s easy to wish for a life of perfect health, but despite how my disease has ravaged my small intestine and led to pain elsewhere in my body – whether it’s in my joints or from the osteoporosis in my back – I still manage to get up each day and live a very full life, with a perspective I never would have gained without this journey. Since being diagnosed, this body of mine has still served me well. I managed to work full-time and live out my dream of working in television for the first 10 years I had Crohn’s. I trained for and ran in 5ks, 10ks, 15ks and a half-marathon. I felt completely healthy and on top of the world on my wedding day (didn’t have one bathroom break!). My body was a safe haven for my children throughout pregnancy and allowed me to bring a healthy son and daughter into this world. Photo by J Elizabeth Photography It’s those “accomplishments,” those big “wins” I choose to focus on. It’s the moments when I felt like my peers. It’s the times Crohn’s wasn’t top of mind and I felt like everyone else. It’s when I felt invincible if only for a moment, whether it was crossing the finish line or holding my babies on my chest for the first time. It’s the victories along the way that help me push through on the difficult days and through the flares. Because while those times push me to the brink of breaking, I tell myself there’s only one option – and that’s to bounce back. I’ve been that girl staring in the mirror wondering “why me.” I’ve been that girl with tears falling onto my thighs as I sat on the toilet hating that I had this dreadful disease. I’ve stood in the shower and watched the water hit my resection wounds and felt ashamed that my body was no longer scar-free. I’ve been all those things – but as the years go on and as my diagnosis days get further and further in the rearview mirror, that girl who wondered “why me” is becoming a distant memory. That girl is now a woman, a mother, a wife and so much more. Crohn’s is a part of who I am, but it’s far from my identity. By altering your outlook and your perspective and loving the person you are and the body you have – despite the physical and emotional scars left behind from past battles – you open yourself up to self-love. Pat yourself on the back for all the steps you’ve taken to rise up. Smile through the tears with the confidence in knowing you will get through this – one day, sometimes one hour at a time. It’s OK to have bad days. It’s OK to struggle. That’s all part of it. Just make sure you give some extra care, love and attention to the person you see looking back in the mirror. You’ve been through a lot. And you’re still here. Fighting. Living. Breathing. Now all you have to do is believe in your strength and love yourself for your resilience.

When I Experience Compassion Fatigue as a Patient Advocate

Every hour of every day we live with inflammatory bowel disease (IBD). Once you hear the diagnosis, it’s a part of you  for every single moment of your life. That alone feels isolating and scary. When you decide to share your personal patient story publicly, you open yourself up to a world of support. As a patient advocate, you also become somewhat of a confidante and voice of reason for your peers in the community. While it’s incredible to be able to connect with those who live your reality, there are times it can feel overwhelming. Personally, as a patient advocate and blogger who’s battled Crohn’s disease for nearly 13 years, I consider myself well-versed on the topic — but, all I know, are my own experiences. IBD presents differently in every person. Part of being a patient advocate is showing support for others living your same reality. The girl in the UK who was recently diagnosed and nervous about heading off to college. The young man in Nebraska going through a bowel resection surgery. The kindergartner receiving her Remicade treatment. Since my bowel resection surgery in August 2015, I’ve been able to manage my disease with daily medication and a biologic injection. Luckily, I’ve felt well most of the time since then, and haven’t been hospitalized since my surgery. That being said — when friends (many who I’ve never met) and strangers reach out — through email, Instagram, Twitter, Facebook, texting around the clock, desperately asking for advice and support…my heart sometimes starts to ache with stress. I want to be sensitive with how I word this article, because the last thing I want is for people to stop reaching out when they need advice or support. What I do want is for people to recognize what compassion fatigue is…and how as chronic illness advocates and caretakers we need to be mindful of how we’re feeling and internalizing the struggles of those around us. When people ask me about my diagnosis, my bowel obstructions, my surgery…it draws a great deal of emotional energy, and at times, can open up proverbial wounds. I’m happy to share my patient journey with transparency and honesty. But, day after day, year after year, these conversations can be a burden. A burden because I truly worry and care about each person I talk with. Even if I’m feeling well and in remission — the disease stays top of mind and I start to question my own well-being and health. Like everything in life, finding balance and making time for self-care is paramount. The IBD family is a fantastic community of support. I am just one piece of the advocacy puzzle. It’s all about maintaining that balance in a healthy way, recognizing when the fatigue is taking ove r— and knowing when to take a breath and step away. I’m much better able to connect with people when I’m recharged and energized. If I’m at the end of the rope all the time, I simply don’t have anything to give, and everyone loses. I offer support from the bottom of my heart, but as a mom and a wife, I do need to recognize when it’s time to unplug and take time for myself. When my baby naps each morning, I spend that “break” on my computer writing articles about IBD, participating in Twitter Chats, and talking on the phone with those who want to hear about my patient experience. Recently, my husband said we should start a new rule in our household, no phones after 8 p.m. I was thrilled with the idea. So often when we put our son to bed we resort to hanging out on the couch, with the TV on and phones in our hands. Much of that “free” time I used to spend responding to messages from those seeking IBD support. Sometimes you just need to put down the phone and recognize how important those right in front of you are. The people who are by your side every single day. Your family. Your caretakers. Show them the love and the attention they deserve. Nurture the relationships that matter most to you. Be present in the moment. Compassion fatigue ebbs and flows. Like anyone who battles fatigue from IBD, some days I feel like I can take on the world and spend all my free moments on the phone or responding to emails. Other days it takes a lot of effort for me to email back someone who I’ve never met and discuss why I chose certain medical paths, how my pregnancy was with Crohn’s, etc. Time is precious. I absolutely hate not responding almost immediately to everyone who reaches out, but please be patient with me. As part of my self-care and disease management I need to de-stress, so I don’t put my own health at risk. This article is painful for me to write — I can’t stand admitting that I am struggling to do it all. But, compassion fatigue has been something I’ve been feeling for a few months. I want to be the best advocate for others and do all I can to make a difference and show there’s so much life to be lived outside of your disease. I want you to see how much you can thrive with this disease and all that you can accomplish. I want to be the person I needed the day my world turned upside down when I was diagnosed. I want to be all the things. But it’s not possible. It’s not fair to me, it’s not fair to you. When you reach out, if it takes a few days for me to respond — don’t think it’s because I don’t care or won’t reply. I will. If you have questions about why your prednisone is making you feel a certain way or how to do a colonoscopy prep — check with your doctor first. Oftentimes many questions and concerns are covered extensively on blogs and in articles. A simple Google search may give you all the information you need. Lastly, know my concern and wish to help is genuine, but there’s only so much of me to go around. I’ve been in the hospital bed. I’ve been too weak to walk up a few stairs. I’ve been on 22 pills a day. I’ve sat on a news desk and anchored countless shows while dealing with my disease in silence. I’ve woke up on my wedding day unsure of what my disease would do. I’ve been pregnant and dealt with the fear of flaring while creating a life. I’ve done a lot as a patient and a person. So, when I’m feeling well and trying to enjoy the feel-good days that I have…that can be taken away in the blink of an eye, please understand that I’m here for you, but need to also take time for me. I’m going to leave you with this quote from Daniel Garza, an AIDS, cancer and ostomy advocate. Daniel shared this eloquent description of patient advocacy during the HealtheVoices conference I recently attended in Chicago. “We all have this fire. We’ve been in quick sand and high tides and made it to the end. Despite the doubts, after everything, we don’t want other people to go through it. We’re the coat we put on the puddle, so people don’t get their feet wet. We don’t care if we get dirty again.” In closing, allow me to continue to be that coat on the puddle for you, but please have a little patience with me.

A Valentine's Day Letter to Crohn’s Disease

Yes, you read that title correctly. I used the words “Valentine’s Day” and “Crohn’s disease” in the same sentence. I’d be lying if I said I would have been able to do that years ago. Hate would have been a more relatable feeling and word. As Valentine’s Day approaches and love is in the air, I’m choosing to look at my disease with my whole heart and to share my feelings with you. If it weren’t for my Crohn’s I wouldn’t know my strength. If it weren’t for my Crohn’s I wouldn’t have my perspective. If it weren’t for my Crohn’s I wouldn’t know the meaning of a “feel good” day. If it weren’t for my Crohn’s I wouldn’t be able to empathize with others on the same level. If it weren’t for my Crohn’s I wouldn’t be able to see people’s true colors. If it weren’t for my Crohn’s I may have ended up marrying a person who really wasn’t about being with someone in sickness and in health. If it weren’t for my Crohn’s I’d feel invincible and take my health for granted. If it weren’t for my Crohn’s I wouldn’t be me. In life there are triumphs and there are challenges. There are stresses and there are successes. There are highs and there are lows. I find embracing the good, the bad and the ugly enables us to reach our potential. The painful, low points are difficult in the moment, but in hindsight they push us to our limits and show us all what we are capable of. People often ask me if I wish I didn’t have Crohn’s disease. I find it to be a loaded question. I’ve gotten to the point in my patient journey where I wouldn’t change a thing. So much of taking on this chronic illness is your attitude. There’s no sense in wondering and wishing for something that is not possible. Once you take a deep breath and stop living in your healthy past, you come to realize that you were given this hand of cards for a reason. Your voice, your experience, your journey has the power to inspire. You have the ability to change lives. You have the opportunity to show that invisible illness and everything that comes along with it doesn’t need to destroy your dreams. While I know some days, weeks and months are going to be treacherous in this journey, do yourself a favor and stop being so hard on yourself. Love yourself. Love all of you. Even the part of you that is broken on the inside. I’ve been through the flare-ups and the scares. I’ve overcome pain that causes me to pass out. I’ve weathered the storm of being wheeled into surgery. I’ve done hundreds of injections and blood draws and pokes and prods. At the end of the day, you rise. You take those steps to heal. You focus on getting better. You do all you can to make it through. Crohn’s and any chronic illness for that matter gives you this opportunity over and over. So, while we all tend to have negative feelings about our health and worry about what the next hour will bring, try and pause and stop for a moment. Think about all the beauty and insight it’s provided — and love yourself and your disease for a second. We want to hear your story. Become a Mighty contributor here .

How I've Become Stronger Because of Crohn's Disease

I recently came across the following quote, “It doesn’t get easier. You get stronger.” Those words made me pause and reflect on my personal patient journey and also think about how I give advice to those in the inflammatory bowel disease (IBD) community. While I believe the diagnosis and the initial flare-up that hospitalizes people is probably the most earth-shattering to many of our worlds, maybe as time goes on we just become a bit desensitized to the worry and all the pain. Each flare-up and rough patch has its own set of memories. Even after more than a decade of fighting an illness that’s become a big part of who you are… it’s still just as scary as they roll you down for the abdominal CT scan to see what’s brewing. It’s still just as worrisome when your significant other races to the hospital and you walk through those ER doors, knowing you won’t be going home. Each of these moments builds up our strength, even if while they are happening we feel weak and out of control. I’ve come to realize that all my hospitalizations are a bit of a blur. They are hazy in my memory. Maybe I’ve blocked them out. The clearest moments are those when I get to go to home. That first walk at the park after being in a hospital for days on end. Getting to eat a full diet and saying “so long” to the clear liquids. Staring out the window of the car while “Fight Song” played on the radio after my bowel resection. Looking in the mirror at my battle wounds and being proud of what I’ve endured to get to this place, rather than ashamed. Taking that final Prednisone pill and surviving another wean-down process. Those are the times that make us all stronger. We come to a place where we’ve overcome our difficult present and gotten to those brighter days. You must not sell yourself short. You need to soak it up and give yourself credit — because no one around you truly knows what it’s like to be in your shoes. We can have similar experiences, medications, surgeries… but, each of us has a unique story to share. Battling IBD is certainly not sunshine and unicorns, but it makes the feel good days much more beautiful. We learn not to take anything for granted — whether it’s feeling good after a meal out with family and friends or getting to attend a wedding and not feel any pain while you’re on the dance floor. Those are the times we celebrate. It’s verbally getting to say to my husband, “I feel so good today.” It’s finding joy in the times when your disease gives you a break and you can feel like everyone else. It’s having the energy to take my son on a long walk and breathe in the fresh air, pain free. It’s eating popcorn as I type this and not feeling any repercussions! So while Crohn’s is a roller-coaster of emotions and experiences, there is one constant through it all. Not just for me, but for you, too. We are strong. We are resilient. The struggles and pain are fleeting, they will pass. Just as those amazing and happy days will. Live in the now — don’t stress about tomorrow, and only look back to recognize how far you’ve come along the way. When I think of myself before Crohn’s, it’s almost like a different person. We want to hear your story. Become a Mighty contributor here .

Lessons Learned From 4-Year-Old Girl Diagnosed With Crohn's Disease

Meet Penny. Penny is your typical sassy, feisty and vibrant 4-year-old. Behind that big smile and those glittering eyes filled with mischief is so much more. She’s a little girl fighting a big disease. A disease that flipped her young life upside down. A disease she will battle for the rest of her life. Penny was diagnosed with Crohn’s in January 2017. Penny’s mom Beth came across my blog, Lights, Camera, Crohn’s: An Unobstructed View and reached out. Reading the desperation and fear in her words, but also the appreciation for my patient advocacy brought tears to my eyes. I felt an immediate connection with this family and specifically this little girl. It all started this past November when Penny had blood in her stool. At first, her parents and doctors thought it was merely constipation. Something common that many children go through. On Thanksgiving Day, that all changed. Penny was at the Detroit Lions football game with her parents, a family tradition. When Beth took Penny to the bathroom the entire toilet was filled with blood. As you can imagine, it was horrifying to see. After several tests, Penny was referred to the PediatricGastroenterology department at University of Michigan-Mott Children’s Hospital in hopes of finding answers. On January 11, 2017 Penny went in for an upper and lower scope. As soon as it was over, Beth and her husband were called in to meet with the medical team and were told Penny had Crohn’s disease. Let’s pause for a second. Imagine being told your 4-year-old daughter, who was perfectly healthy up to this point, had a chronic disease, with no cure. Beth says, “When we were initially given the diagnosis, I was numb. Andthis wave of ‘mama bear’ protection came over me. I went through the motions of gathering as much information as I could so I could do everything I could to help her. After the initial shock passed, my heart broke and I also became angry. I hate that she has to go through this and especially at such a young age. I cry…a lot. I am trying very hard to let go of the anger but it is really hard not to be angry at the world when your baby is handed such a huge, life-altering diagnosis.” Since being diagnosed in January, Penny has spent more than four weeks in the hospital. She’s undergone MRIs, ultrasounds, countless blood draws, two infusions which were believed to induce heart failure, time in the cardiac ICU, two different PICC lines, a blood clot, an NG tube, physical and occupational therapy… you name it, Penny has endured it. “This diagnosis has changed all of our lives. Our lives have been consumed by it. It makes my heart ache to think there is no cure and she will forever live with this. She is 4. She has a lot of life left to live and a long time to live with Crohn’s. The only positive thing is that she will not remember life without it and will know how to live life with it. She will learn early on how to take care of herself and also how to be her own best advocate.” When Penny gets her infusions she’s happy as a clam once the IV and blood draw are behind her (can’t blame her!). She spends the rest of the time playing, watching movies and eating snacks. Penny has taken all the challenges in stride and hasn’t allowed the difficult days to take away from her happiness and magnetic charm. Beth says her daughter inspires her every single day. “She inspires me to be more courageous. She inspires me to do hard things! I find myself often saying, ‘If Penny can do it, I can do it.’ She inspires me to find happiness in my day. Throughout the entire hospital stay, even on her hardest days, Penny would find something to laugh or smile about.” Beth and Penny are an inspiration to the inflammatory bowel disease (IBD) community. In just 10 months they have sponsored “Kid Care Bags” for kids in the infusion center, sold “Penny Power” t-shirts and donated the money to the Crohn’s and Colitis Foundation and participated in the Take Steps Walk in Detroit. Beth and her husband teach at a local high school and this fall the volleyball team is doing a Crohn’s Awareness game. This family is doing everything they can to help and advocate for others. Penny is learning and witnessing at a young age that just because you have a chronic illness doesn’t mean you can’t lead a full and beautiful life. When it comes to advice for parents with children who are battling IBD, Beth says you must learn everything you can and be your child’s number one advocate. Connect with parents and adults living with IBD, as they will be your greatest resources and provide hope and perspective. Most importantly, help your child learn about IBD and what is going on in their body. Why the doctors are checking them, why they are in the hospital, why they are in pain and why they need daily medication. Like the rest of us, Beth hopes and prays for a cure someday. “My prayer every day is that my girl will see a cure in her lifetime. But until they findthat, my hope is that every patient finds the best way to manage his/her symptoms and learns to become an advocate for themselves. I hope kids are able to manage their symptoms so they can just be kids who take medication and that IBD doesn’t consume their days.” As a soon to be 34-year-old, who’s battled Crohn’s since I was 21, I have a few words for Penny and her amazing family and support system. While the journey won’t always be easy and your patience and strength will be tested time and time again, you will always rise above. Each flare-up and tough moment is a setback, but this disease does not define who you are. You are not “Penny with Crohn’s disease.” You are so much more. You are a girl with a promising future, who can achieve and accomplish anything you put your mind to. In these past 10 months since diagnosis you’ve already grown and learned more than you realize. By the time you grow up you will be so strong and have a perspective your peers will admire. So, keep being you. Don’t let this hold you back. And know that even though you may be small in stature, you have the ability to make a big difference in the lives of others. I know I already look up to you. Click here for information on IBD. Research the best Pediactric Gastroenterology hospitals. And know you are not alone in your worries, concerns and struggles. We want to hear your story. Become a Mighty contributor here.

Letter to Crohn's Disease After Living With the Condition for 12 Years

It’s safe to say the month of July has been my least favorite month for the last 12 years. July 23, 2005 was my own personal “D-day”…the day I was diagnosed with Crohn’s disease. I managed to stay out of the hospital and control my disease with oral medication until July 2008…fast forward to July 2015 and I was hospitalized with my third bowel obstruction in 16 months and told I would need bowel resection surgery. The month of July is just not my friend! When I got engaged my mom and I looked at one another and knew the wedding would not be planned during that month. As August approaches, I always feel a bit of relief. I can hardly believe yesterday marks 12 years since I was told I had a chronic illness, for which there is no cure, and one year since I started this blog. Here’s a letter to my old friend, Crohn’s. Dear Crohn’s, You’ve been a part of me for so long now, it’s difficult for me to remember my life before you. You’ve challenged me, shaken me to the core, tested me and taught me. You’ve pushed me to my limits, but grounded me at the same time. You’ve caused me to think about health in a whole different light. The stigma of living with you and the lack of education out there about what you are surprises me to this day. You are so much more than a “bathroom” disease. You are so much more than a bad stomachache. You demand constant attention and don’t care who has plans, because you do things on your own watch. You perplex me just when I think we’re in a good place and I have you figured out. You love to play hard to get and rarely take my feelings or worries into consideration. You test my patience and have created a constant inner dialogue in my head since the moment the doctor opened up his mouth and uttered the words… “You have Crohn’s disease.” I will give you credit though – for the most part you’ve responded well to medication and allowed me to keep my drug regimen in check the last nine years. I’m thankful you’ve enabled me to stay on Humira and that I have yet to build an antibody to the drug, even though I went off of it for three months while healing from my bowel resection surgery. You obviously love when I’m pregnant…you tempt me to want a huge family! Even though you’ve stricken me with several hospital stays, surgery, scary ER visits, tests, pokes and prods…you stayed silent on my wedding day and enabled me to become a mom without causing one complication or issue. For that, I am eternally grateful. You’ve also empowered me and brought clarity to my life about what’s important and how far a compassionate heart can go. While most of the time I think of you as my greatest enemy, at times you’re also my greatest ally. You show me people’s true character, and who is a true friend. You shed light on who I can lean on when I’m too weak to stand on my own. You helped me navigate relationships and realize that Bobby was the best person and caretaker a woman could ask for. When you decided to strike I was a frail 21-year-old girl, fresh out of college, wondering h ow I was ever going to live a normal life and work full-time. In the last dozen years, you’ve been with me every step of the way and witnessed firsthand how I’ve overcome each setback, each flare-up, all the scares and all the daily worries. I hope you’re scared of me now. Here’s to many more years, Natalie We want to hear your story. Become a Mighty contributor here.

Husband Explains What It's Like Being Caretaker of Wife With Crohn's

Yesterday marked my one year wedding anniversary. In the days leading up to the special milestone, I got to thinking about how daunting it can be to have a chronic illness and wondering if you’ll ever be able to find someone who loves you, despite your health imperfections. Since I was diagnosed with Crohn’s disease at age 21 in 2005, I’ve experienced how the disease has an impact on the way relationships play out. It’s not always pretty, but it does provide extreme clarity about people’s characters. Through social media I’ve come across many people and articles that express concern about ever being able to find a lifelong partner and worry about whether having a child is ever a possibility. I’m here to tell you it can be possible to have it all. Your disease does not always limit you in this aspect of life. So, what does one look for when it comes to finding the perfect partner who also makes the perfect caretaker? You need someone like my husband, Bobby. Prior to meeting me, Bobby did not know what Crohn’s was. When we went on our third date, I told him during lunch. It was my way of being transparent and laying it all out there. Was I nervous? Of course. Was it a relief to get it all out in the open? Absolutely. Has he been there for me every feel-good and difficult day since? Yes. Six months into our relationship I had a bowel obstruction that landed me in the hospital for five days. In the blink of an eye, I went from feeling fine to being rushed into the ER. Bobby quickly saw how debilitating, painful and scary Crohn’s can be. In that moment he went from being my long-distance boyfriend to my lifelong rock. The first time Bobby experienced a hospital stay with me was the toughest for him. “I feel bad even saying anything is hard for me when I know your insides are twisting and torturing you,” he told me at the time. “But there is no better phrase than ‘it sucks’ to describe how I feel, knowing you’re going through hell and there’s nothing I can do.” “I felt completely helpless,” he recounts. “I remember going to my car and just sitting there thinking about everything that had happened. My mind was going in a million different directions, and I was feeling every emotion. I was tired, anxious and worried. Yet it wasn’t even one percent of how bad you were feeling. Part of me wanted to punch something out of pure frustration, while another part of me was ready to break down and just cry for a moment.” Fast forward more than three years later.I interviewed Bobby this week to get a better feel for what it’s like to be on the other side of things – as the constant caregiver. NH: What advice do you have for those whose significant other battles chronic illness? BH: I don’t look at you as having a severe chronic illness. I don’t let that be the thing I think about with you. I find I almost reject the idea of you being sick until we’re dealing with a flare-up or rough patch. My advice would be to treat the other person like everyone else. Don’t make them feel like they are any different because of the health issues they face. Be by their side and think of anything and everything you can to take their mind off the current situation. Every person is different – but when you love someone, you know what takes their mind off things and what they like best. NH: What have you learned since we met in summer 2013? BH: At that time I just knew the word Crohn’s… I had no clue what it entailed or meant. When you first said it, I wondered if it was contagious and how it impacted your life. It’s been nearly four years and I’ve witnessed how devastating it can be. It’s hard to see the person you care about in so much pain. I always try to be supportive, but also keep our life in perspective and recognize that there are many people all over the world going through a whole lot worse. We’re both still breathing, both still living. You may be in pain, but we’ll push through. To this day, I’m fearful of emergency situations and complications that may arise. NH: When I was wheeled away to surgery for my bowel obstruction in 2015, what crossed your mind? BH: I felt sad and fearful. I envisioned you being nervous and scared. It sucked watching you be wheeled away because I wanted to be there with you. After surgery, I was relieved the procedure was over, but was still concerned because I know with Crohn’s you’re never entirely out of the woods since there is no cure. When you’re in the hospital, whether it’s for Crohn’s flare-ups or when you were delivering Reid, there is a certain vulnerability about you that makes me want to do all I can to take care of you…and it’s easy, because I hate seeing you like that and just want to help you get back to feeling 100 percent. NH: How has living with and loving someone with chronic illness inspired you or changed your perspective? BH: It’s a constant reminder that this isn’t going away…when I see you give yourself shots and how painful they are for you it’s a reminder that you go through a lot to keep everything at bay. It inspires me that despite what you go through with the disease, you have so much energy all the time and are such a ray of sunshine through it all. NH: What advice do you have for those with chronic illness who are concerned about finding “the one?” BH: Don’t let it limit you in anything you do. Don’t feel like you need to share it until you are ready. I wouldn’t be fearful of it being a deal-breaker. If the person is worth your time and is in it for the right reasons…and truly cares about you, it won’t matter. You are so much more than “Natalie with Crohn’s disease.” There’s no downside in sharing. There’s a good chance the person will feel closer to you for knowing that personal detail and they’ll probably be thankful you were willing to share. Try your best not to be wrapped up in worrying what people will think about having Crohn’s. Be with someone who makes you feel comfortable and at ease with what you are going through. When I knew I liked you, I wanted to be around you and taking care of you when you needed it. It was and is second nature to me. When you love someone and they are hurting…you want to be the one who’s there for them. NH: Aww, thanks honey…any last thoughts? BH: Remember that every moment in life is fleeting and temporary. In the good times and bad…you get through it. Try your best not to worry about things you can’t control. Stress is a trigger with Crohn’s. It’s easier said than done – but know you can’t control everything. Stay away from things like corn on the cob and coffee if you know it’s going to cause issues. I don’t look at myself as being a special person, babe. Anyone you love…you do what it’s going to take to help them. We learn together through each situation, experience and setback. We want to hear your story. Become a Mighty contributor here. Thinkstock photo via teksomolika.

The Fortune Cookie That Helped Me as a New Mom With Crohn's

Being a new mom is a lot like navigating what life is like with a new diagnosis. It’s unchartered territory, you learn as you go…and there will be incredible high points and low points along the way. I had to laugh at myself the other day. The morning started with my newborn son, Reid, peeing in my mouth while I changed his diaper. For the most part my little guy is an absolute angel when it comes to eating every three to four hours and sleeping in between. But this day was different. I couldn’t get him to stop crying. He was inconsolable for hours. As I paced around the house doing a silly waltz and singing ridiculous lyrics to him on the fly, I had to pause and laugh at my appearance in the mirror. For a moment I felt unrecognizable to myself. While being a new mom is miraculous and the best gift—it’s a major adjustment, something all parents can attest to. As the clock inched closer to the evening hours I realized I hadn’t eaten since breakfast. I desperately grabbed a leftover fortune cookie on the table from a night my girlfriends came over and brought dinner. The fortune read, “Functioning superbly comes automatically to you.” I had to laugh. I kept the fortune as a reminder that no matter how difficult some days may be, whether it’s in the mom department or as a Crohn’s patient… it’s important to remember we all have what it takes to face obstacles that come our way. Change in life is never easy — but attitude and finding the humor of it all are everything. At this point the doorbell rang and I received a package from a friend in San Diego, a complete surprise and so thoughtful. When I texted her to say thank you, she wrote back and said… “One day at a time, some days one minute at a time.” Those words are so important. As a woman who battles chronic illness and is learning what it takes to be a mom… those words ring so true to me. If we all focus on what’s next and get consumed by fears and worries of the future, we’ll miss all the amazing moments along the way. It’s imperative to celebrate the mini victories — whether it’s having a feel good day or learning how to put your baby in the car seat and explore the outdoors on your own. Each day is a gift. There are so many parallels between chronic illness and motherhood. Some days are going to be a breeze, while others challenge your patience and strength to the core. Take time to unwind and destress whenever possible and take advantage of the support around you. If friends or family members want to offer a helping hand, don’t be afraid to take them up on it. There’s no telling what tomorrow will bring. Take advantage of today. Remember to breathe. Have faith that while there will be difficult and scary experiences, they may help you learn and grow. I think back to myself at age 21, frail in the hospital bed, trying to come to terms with the fact that I had a disease that would be part of me for the rest of my life. In that moment, I had no idea what the future would hold. While the disease has tested me and given me immense amounts of pain, it’s also made me strong, resilient and brave. Now, as a new mom, almost six weeks in, I look in the mirror and may not recognize myself without my hair and makeup done, wearing yesterday’s PJs… but, I know in my heart my baby boy has already shown me how deeply you can love another human being. He’s shown me what it’s like to know another person’s survival depends completely on you and that you have the ability to shape a life… and a family… and that my friends, is magic. We want to hear your story. Become a Mighty contributor here . Thinkstock photo by Levent Konuk

A Letter to My Unborn Son, From Your Mom With Crohn's Disease

It’s hard to believe you could arrive any moment now — we are so excited and anxious to see your face and hold you in our arms. You’ve been a miracle since the moment you were created and words don’t do justice for how special you are to us already. Feeling all your kicks and pokes and being on this journey with you has changed my perspective on life. I love knowing this is just the beginning and that you’ll continue to open my eyes about this world and always teach me so much. I find myself crying tears of joy any time I hear certain songs or start thinking about how grateful I am to be at this point. I’ve waited my whole life for you. For more than 11 years I’ve battled a disease that doesn’t always make me feel the best. It’s scary at times and puts me through a lot of pain and worry. You have been the best medicine for me, silencing my symptoms and making me feel like superwoman. You’ve shown me that everything leading up to this point has prepared me and given me the strength I’ll need to bring you into this world. As hard as it is, I want you to know there will be days when mommy will be in pain on the couch, unable to play with you. There will be days I’ll be holed up in the bathroom and may need you to be patient. Unfortunately, there will be days and nights where I may need to be away from you as I’m in the hospital. There will be times when you see Mommy take medicine and give myself shots. Any time I cry or seem like I am hurting — know that you and your dad are my reason to fight and you are my reason to overcome the tough days. No matter how scary it may be, mommy will always overcome and will always be there for you. I will protect you and watch over you, keeping an extra close eye on your health to make sure you aren’t showing an signs of having Crohn’s. And if you do grow up and receive the same diagnosis, know that Mommy will be your biggest cheerleader and advocate. As much as it will break my heart to know what you will endure, I will be able to empathize with you and know how to deal with what you’re going through. I will do everything in my power to calm your fears and navigate the unknown. I hope and pray we never have to share that bond together, but know if those are the cards you are dealt, Mama has your back more than you know. Until we meet, know that you’ve answered so many prayers and are loved beyond measure by so many people. I will forever be captivated by your existence. Thank you for being my “healing hands where it used to hurt” and for showing me that despite all the uncertainty life brings, there will always be one constant — you will always be our priority, our dream come true and the love of our lives. See you soon,Mommy We want to hear your story. Become a Mighty contributor here . Photo by J Elizabeth Photography.

How Crohn's Disease Prepares a Woman for Pregnancy

“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 might 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 pajamas 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 struggle 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. Photo by J Elizabeth Photograhy 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 might 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 kickstarters 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. Photo by J Elizabeth Photograhy 4. Needles are no big deal. From IVs to blood draws to 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,” so 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. Photo by J Elizabeth Photograhy 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, with many fainting or passing out. I’m comforted by the fact that my husband is my rock and his support, compassion and patience always get me through everything. I know he’ll be holding my hand and keeping my eye on the prize until our son is born. 1. Going to the hospital for something good. This is the best part of all! Whether you were just diagnosed or you’re a chronic illness veteran, 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 you get to love and adore, a new member of your family. This is one of the few times your pain has purpose. We want to hear your story. Become a Mighty contributor here. Photos by J. Elizabeth Photography