An invisible illness, Crohn’s disease impacts the patient and those closest to them. One patient shares how the love of her life helps her thrive every day.
Life after college is supposed to be one of new opportunities, new adventures, and endless possibilities. For Natalie Hayden, she worried she would miss out on her dreams of being a television reporter when she was diagnosed with Crohn’s disease, an inflammatory bowel disease that causes chronic inflammation of the gastrointestinal tract.
“I didn’t know what was going on. I felt very isolated and very alone,” says Hayden, who at the time would fight through the pain and continue to attend social events, often suffering in silence. “Finding out at 21 that you have a disease that has no cure is a very heavy burden to bear.”
Eventually Hayden settled for a new normal. She powered through her pain and fatigue on a daily basis, until she experienced fewer “good” days because of her symptoms.
Fast forward three years, Hayden was working in her dream job as a TV news anchor when she got hospitalized due to an abscess the size of a tennis ball in her small intestine. After that, Hayden’s doctor ordered a change in treatment.
Then, eight years after she was first diagnosed, she met the love of her life, Bobby.
“On the third date she told me she had Crohn’s. For me, I didn’t know much about the disease, but it had no bearing on how I felt about her,” he says. “I’d never even had a hospitalization, but I knew I wanted to be there for her.”
They kept seeing each other. Six months into the relationship, she had a bowel obstruction which landed her in the hospital for several days.
“A bowel obstruction would make me black out because the pain is so intense that there is nothing else I can focus on,” recalls Hayden. “It brought me to my knees. I could barely walk.”
Shortly after the couple got engaged in 2015, Hayden felt the familiar gnawing pain in her abdomen, and knew it was another bowel obstruction. She ended up having 18 inches of her small intestine removed in a bowel resection.
Her then-fiancé was there by her side as she realized she needed a new care team, one she felt would really listen to her about her concerns and needs, and also be more assertive in her care.
“We should always strive to have better care and improve her number of good days,” says Bobby Hayden. “I just try to be there for her, listen to her, and ask her - how can I help?"
It was just in the last year she felt comfortable going to her gastroenterologist appointments alone, but Natalie continues to be honest in communicating about her disease, whether it’s with her husband, her doctor, or her online community. She advises fellow patients to find and build their own support network, whether it’s with family, friends, or online.
Today, the couple are married, raising two young children. Natalie Hayden is in remission, continuing her work as a patient advocate and blogger.
To see how Natalie and Bobby Hayden navigate her disease and their daily life, watch the video above.
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