Natalie Hayden of Lights Camera Crohn's
This past month I had the absolute pleasure of interviewing Natalie (Sparacio) Hayden, a former TV news anchor who has become a fierce advocate for those battling inflammatory bowel disease (IBD). Diagnosed with Crohn’s disease in 2005, Natalie knows the ups and downs of dealing with a chronic illness. Her insights are a perfect fit to support all of you in HealthCentral’s IBD community. Below are a few of the questions I wanted to ask since I had the chance to pick her brain. I hope you enjoy my chat with Natalie as much as I did!
Natalie, what is your advice regarding sharing information about Crohn’s disease or any chronic illness with people in your workplace?
I think communication in the work environment is such an important topic for those of us with chronic illnesses and it really needs to be talked about more. Any chronic illness needs to be discussed with your employer from the start — not in the interview, but usually within the first few days of work. When your boss sits down and goes over everything about the position, that can be a good time to let them know. It’s not an easy conversation to have, but I have always gotten a good reception to it. Most people are so understanding and they want to learn and they want to help.
For the first 10 years of my disease, working in television, I didn’t really tell anybody. I ended up in the hospital while working at my second station and they had no idea what was going on. I realized that was a little late to let them know. I have found that once you tell people, they can really empathize with you. Everyone from the camera guys to the weather people would help me when I wasn’t having a great day. There were so many ways they allowed me to be able to “let go” when I was not on camera and that made me able to do my job better. It was just nice to have people at work who care for you. My co-anchor even rushed me to the hospital once before the morning show. You can find your true friends — even in corporate America.
How was being pregnant different while dealing with Crohn’s, and what would you say to other women with IBD hoping to have children?
I always see questions on social media about women or expectant moms with Crohn’s asking if they can be moms, or if they should be moms, or even if they should get pregnant. I just want people to know that they should not let this disease hold them back from experiencing motherhood. Despite everything your body is going through, it is capable of carrying a child. It’s just a matter of navigating those waters, connecting with your doctors and having people behind you to help. I just don’t want women to feel like: “Oh, I have this body and it’s damaged goods so I can’t bring life into this world,” because you can! Just talk to your doctors.
I stayed on my medications during pregnancy because my doctors felt mom’s health has to come first. It’s definitely difficult to give yourself an injection when your baby is inside kicking your belly. But when the doctors put him in my arms and he was perfectly healthy, it was worth it. It might not have happened if I hadn’t been healthy. The post-postpartum flare up that everybody always talks about was one of my greatest fears. My regular OB (obstetrician), high risk OB, and gastroenterologist all said that: “We know you are in a remission right now but often times when you deliver, it’s that two- to six-month period post-postpartum when things can really get out of whack.” So they kept a close eye on me. Two days after I got home from my scheduled c-section, all the unwanted symptoms started coming back. It was emotional because I had felt so good for nine months and didn’t want to leave my son to be back in the hospital. Luckily I haven't had to be hospitalized, but it’s always weighing in the back of my mind.
What has it been like being a new mom and balancing work, a new baby, and chronic illness?
It’s challenging for anyone to be a new mom, but throw in chronic illness into the mix and it can be really scary. Plus, I’m a “yes person” and I struggle with saying no to things. Sometimes I can stretch myself too thin and I notice I have done that to myself since having my baby. I am often doing so many things that it’s hard to find a free second. When I am working, I may be typing with one hand, with my son in my other arm, trying to navigate this new normal.
I know that I am almost to the point where I have to limit some things because I don’t want to throw myself into a flare up because I have not had time to rest or eat well. When I am sick I feel really guilty if my husband has to stay up and feed the baby, because I want to be there too. It can be hard when I can barely make it through a bottle before I have to run to the bathroom. Those are the times that I feel like I am failing. It’s a guilty feeling, but I think a lot of moms do that. We miss out on celebrating all the good we are doing and instead, just focus on: “Oh I could have done this better.” I’m still trying to learn about navigating that transition.
How do you manage your stress to prevent flare ups?
Stress is definitely a trigger for me. In fact, it is a bigger trigger for me than even diet. I remember getting word that my grandmother was in the hospital and being so upset that it actually sent me to the ER. It’s just an unconscious thing — my mind can wreak havoc on my digestion! I struggle with not allowing those tragedies in life to send me into a flare up.
I try to manage my stress through exercise, meditation, and even simply relaxing my breathing by taking a few minutes to breathe in and breathe out slowly. Sometimes you just have to tell yourself mentally to slow down. Running and shooting hoops have really been helpful in clearing my mind in the past. I am trying to learn how to add those things back into my new normal with a baby at home. If I really think a flare up is getting out of control I will put myself on a liquid diet for a couple of days to calm my bowel down. I will eat Jello, chicken broth, Popsicles — those kinds of things are easy to digest. Sometimes just that a couple of days of bowel rest and I will be fine. Luckily, I haven't had to do that for two years!
How important is support from your friends and family?
You have to have people that are your advocates. My husband is always my rock and stays with me in the hospital, sleeping on a cot next to me when I am admitted. He never eats in front of me when I can’t eat and even showers at the hospital when I have to stay there — he is just unbelievable as a caretaker. It gives me a lot of peace of mind to know that even though we have a child now, he is still going to be my number one support and partner every day. My husband also helps me with my mindset. I will say: “I’m sickly,” “I’m not healthy,” or other statements like that, and he will say: “You are healthy. You have a disease but you are still a healthy person.” I have to remind myself of that when I look in the mirror, to get through those tough days.
This past October my brother ran the Chicago Marathon for me to support those dealing with Crohn’s disease. It was so emotional seeing my brother put his body through all of that just to raise awareness. He was texting me throughout the marathon and a text came in at mile 18 saying: “I’m hurting.” It crushed me. But when he crossed the finish line he said: “I know that I’m hurting, but it’s no comparison to what you have endured for the past 11 years.” I will never forget it. In the future, I would really love to run a half marathon for Crohn’s to raise money for research.
How do you hope to inspire people through your blog?
I feel like there are two ways to approach disease when it comes to a blog, and you will see it as you read through other blogs. Some people choose to harp on the negative and being sick, showing sick pictures and just going on about everything that is wrong. My blog is different in the fact that I like to uplift people. I don’t want to send a bad message. I always wanted to leave people with a sense of strength and positivity, because I feel if I am negative, it will just be a self-fulfilling prophecy. I try to inspire people to see that despite having a chronic illness, you can still lead a normal life and get to enjoy all the blessings along the way, like marriage and motherhood. Crohn’s doesn’t have to hold you back from everything in life. There is perspective and other positive things that come from having a disease like this. It’s made me stronger to share my story and see other people thinking of me and praying for me. I am so much stronger than I ever was prior to my diagnosis. Chronic illness doesn’t have to dull your sparkle!
If you want to hear more about Natalie’s journey, check out her amazing blog Lights Camera Crohn’s. She uploads new insightful and inspiring content every Monday!
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