For the Parent Whose Child was Diagnosed with IBD

I see you. I recently spoke during an Inflammatory Bowel Disease event in Iowa and a woman in front of me couldn’t seem to contain her tears. Her young college-age daughter sat between her and her husband. As I talked about career aspirations, finding love, getting married and having a family—she got more emotional. There was a whole room of people, but as I stood on stage, I kept glancing back at her. It almost felt like we were having a one-on-one conversation. I wanted her to know and feel that my words were heartfelt and genuine. And that her daughter can still realize all her aspirations, whatever they may be.

The lifelong diagnosis is a heavy burden

After my speech, the family approached me. The woman was still crying. I come to find out that her daughter was diagnosed with ulcerative colitis this past year. She’s 20-years-old. In college. She’s battling her second flare in four months. She’s on a biologic and on her second round of steroids since the start of the new year. That first year is brutal. Coming to grips with your lifelong diagnosis is a heavy burden. Wrangling the disease into control and discovering which medications work best and which foods are your triggers takes time, patience, and a lot of energy. It weighs on you every hour of every day. You feel different. Your body and your life feel foreign. You worry about the future and have no idea what the words “ulcerative colitis” will mean for you. Your patient journey has just begun.

As a new mom, with a one year old, I look at that mother through a different lens now. Her heartache and pain watching her child suffer through and battle an illness for which there is no cure, is incredibly painful. It’s a different kind of pain than her daughter is experiencing. But it’s still raw, new, and takes your breath away. It’s not to be taken lightly.

The diagnosis rocks the entire family

When a family member gets the diagnosis of inflammatory bowel disease, it rocks the entire family. Not just the individual dealing with the disease. So often we give the support and attention to the person who is living through IBD, but we give little attention to the caregivers and the people who are by our side through our darkest moments. As someone who’s battled Crohn’s disease for nearly 13 years, it’s taken time, but I’ve come to realize how my illness has impacted those around me. It’s a burden that often comes with guilt, but most importantly, it’s a team effort.

We must lean on one another

There’s no need for anyone to ever feel alone in their fight. We must lean one another as patients and as caregivers as we face the unknown. The mystery of it all isn’t half as bad when you have people to talk to and empathize with. I implore parents of patients to band together. Find local families who live your reality. Reach out to fellow mothers and fathers on social media who understand what it feels like to see your child take on this disease. Just as those with IBD are able to connect immediately with those in the community, you can do the same on the caregiver level.