When it comes to talking about her Crohn’s disease with others, Natalie Hayden of St. Louis is an open book. She’s a public advocate and source of support for countless people with the disease through her blog "Lights Camera Crohn's."
But connecting with others about her health didn’t come easily or quickly to Hayden. When she got her Crohn’s diagnosis in July 2005 -- and for nearly 10 years afterward -- she confided in almost no one about her health struggles. "I was very private from the beginning. It felt like a scarlet letter," she says. "I didn't want to have this chronic illness for which there was no cure at age 21."
Hayden had a very public job in the television industry and says she didn’t want people to look at her differently. "I had several hospitalizations and issues where I was out for sometimes weeks at a time. But I never once shared it with my viewers. I didn't want to be labeled as Natalie, the sick news anchor. I didn't want to have that kind of sympathy or pity."
When Hayden left the television business in 2014, she decided to go public with her Crohn’s and was flooded with well wishes. "I was overwhelmed with the positive -- the prayers, the thoughts, the people saying, ‘My brother has it, I have it.' People from high school were writing me messages. I thought, ‘Why didn't I do this sooner?’"
Now, Hayden says, she sees the huge benefit that decision had on her Crohn’s journey and her overall health. "It can be so isolating and overwhelming at the beginning. You feel alone. It's been so cathartic to connect with people who get it."
The Emotional Side of Crohn’s
Having any type of chronic illness is challenging. When your symptoms revolve around your bathroom habits, it can make it even harder to open up to others. Research shows that up to 40% of people with inflammatory bowel disorders (IBD) like Crohn’s deal with anxiety, depression, and social isolation. Those issues can make symptoms worse.
“We know that depression and anxiety are linked to more severe symptoms of the disease, to more frequent flare-ups, and also higher hospitalization rates,” says Sarah Kinsinger, PhD, director of behavioral medicine for the digestive health program at Loyola University Health System. When it comes to managing Crohn’s long-term, Kinsinger says connecting with others and taking care of your emotional health are key parts of good Crohn’s care. You’re most at risk for emotional struggle right after your diagnosis and when your symptoms are flaring. So getting a support system in place from the get-go is important.
“We encourage all of our [people with] IBD, including those with Crohn's, to start seeing a health psychologist when they're first diagnosed,” says Kinsinger. If you do, you can get a general screening to identify any risk factors you might have for anxiety or depression, she says. It also gives you a chance to talk with a professional about how to handle having a chronic illness, and what it means for your life.
Assemble Your Team
Your health provider can be a starting place for your Crohn’s support network. "There are so many aspects to managing this illness," says Kinsinger. Your doctor can recommend a nutritionist, counselor, social worker, or other specialist you might need. If your doctor doesn’t mention mental health, ask about it yourself so she can point you in the right direction for help.
Emotional connection comes in many forms. You may feel at-home in large groups or find that sharing your story in a public way is therapeutic. Or you may seek comfort in a private session with a health professional or close friend. What’s important is that you find the support that fits you best. It can help you stay tapped into your emotional and physical wellbeing.
Hayden says she’s seen how being in a room full of people who have Crohn’s can help normalize the condition and free people up to be themselves. "You can talk about your bathroom habits, and it's like talking about what you ate for breakfast. It's not a big deal," she says.
If you’re not sure where to jump in, Kinsinger recommends the Crohn's and Colitis Foundation as a helpful starting point. Their website has a database you can use to find a support group near you.
A treasure trove of online Crohn’s support is only a click away, too, Hayden says. "There are thousands of advocates, and blogs, and people on social media. If you use the hashtag #crohns or #crohnsdisease or #IBD on Facebook or Instagram, a million pictures pop up and you're instantly connected," she says.
Talking to people who understand Crohn’s on a personal level is important. But don’t discount friends and family who want to be there for you, too, says Kinsinger. "You may need to spend some time explaining to them what your struggles are, but opening up and asking for that support is an important part of learning to cope with it."