family ties an interview with an ibd sibling

Perhaps you are a parent to multiple children, one with IBD, and you are wondering how your child's IBD diagnosis will impact your family unit. How will the diagnosis impact your family's culture, values, or day-to-day activities? How will your child's IBD diagnosis impact sibling relationships? Or individual parent-child relationships? How will you know which child may need your attention the most in any given moment? The answers to these questions are different for every family because every family is different! However, it may be beneficial to gather resources or hear from other individuals in similar situations to help guide you to making informed, intentional decisions for your family. On this page, you will find an interview I completed with my husband, Bryce Fournier. Bryce has two sisters with Crohn's disease, and one of them was diagnosed at a very young age. In this interview, Bryce gives some insight into his experience growing up as a sibling of an IBD patient. Even if you are unable to directly apply anything you may read in this interview to your unique family situation, it is my hope that you are still able to take some comfort from Bryce's words. Family relationships can still thrive with an IBD diagnosis! Please, enjoy the interview.

Can you please introduce yourself? Give us a little background about who you are and your connection to IBD Connect!

Sure. My name is Bryce, and I have close ties to IBD Connect through my family. I'm the son of Lisa, the founder and president of IBD Connect, and I'm married to Emily, IBD Connect's blog writer and media director. My hobbies include working out, spending time with my family, and reading about theology. In my professional life, I'm a behavior analyst working in special education with children who have autism in a public school setting.

Can you please tell us a little more about your relationship with your siblings? Overall, what did your childhood look like?

Of course, I'd be happy to share more about my relationship with my siblings and my childhood experiences. I come from a family of four siblings: an older brother named Nick, an older sister named Jaimee, and a younger sister named Randi. Both of my sisters have been diagnosed with Crohn's disease. Looking back on my childhood, I have fond memories of spending quality time with my siblings, particularly with Randi. Because my older siblings Nick and Jaimee are considerably older, being 9 and 7 years older respectively, I often hung out with Randi, who is just 2 years younger than me. We frequently had friends over and enjoyed each other's company. Randi's diagnosis occurred while we were both still very young, so her journey with IBD was always a part of our family's narrative. Jaimee, on the other hand, was diagnosed as an adult, well after we had all moved out of our parents' home.

Randi was diagnosed with Crohn's disease when you were both very young. Do you remember a specific moment in which you first learned about her diagnosis? What were your thoughts and feelings at this time? How did your family handle the news overall? If you don't remember a specific moment in time, do you remember the general culture of the home around the time of Randi's diagnosis?

As you mentioned, Randi's diagnosis with Crohn's disease came about when we were both quite young. I believe I was around six years old when Randi officially started her journey with IBD. While I can't recall an exact moment when I was told about her diagnosis, I do recall that there was an overall sense of stress and tension within our home around that time. I could definitely sense that something was wrong. I remember that each of our family members tried to work through the hurt and the confusion of the shocking diagnosis in their own way. My mom, Lisa, immersed herself in researching and studying the medical literature related to IBD. She was frequently communicating with medical staff at doctor's offices and hospitals. My dad, Clay, was more inclined to research holistic and natural remedies for Crohn's disease, exploring alternative treatment options. Because I was so young, I really don't remember a time in which Randi didn't have Crohn's disease. I never thought of her as different or frail. To me, Randi was just my sister! I knew that Randi needed the bathroom more frequently and that she was frequently fatigued and not feeling well.

What kind of support did you and your family provide to Randi during flare-ups or challenging times? How did this affect your own experiences?

When Randi experienced flare-ups, I recall her requiring a considerable amount of attention from my parents. My parents remained dedicated to managing her medications, arranging doctor's appointments, making hospital visits, and monitoring her restroom needs. Even during periods of remission, we were vigilant about locating nearby bathrooms wherever we went, prioritizing this aspect. Our outings were strategically planned around meal and medication schedules to proactively address and alleviate potential flare-ups.

Were there any specific moments or experiences that stand out to you as particularly challenging or significant while growing up with a sibling with IBD?

Of course! As a child, I was never particularly needy for attention. Generally speaking, I was content playing individually or entertaining myself with toys or activities. That being said, I sometimes did feel as though Randi seemed to be the center of my parents' attention. These moments were more palpable during flare-ups, extensive hospital trips, or periods in which Randi was feeling especially fatigued/ill. As an adult, I now understand that my parents needed to prioritize Randi's medical needs during these times. I understood that as a child to some extent as well, and I did recognize that my parents genuinely tried to balance Randi's needs with my needs. That did not make it any less difficult as a small child, however. I also feel as though I had trouble comprehending the true extent of Randi's medical needs, especially during flare-ups. I sometimes struggled with rearranging our schedule or changing plans due to the unpredictable nature of Crohn's disease.

How did you manage to balance your own needs and emotions with the demands of supporting Randi's health and well-being? Did you ever feel any jealousy or resentment towards the attention Randi received due to IBD?

Managing my personal needs and emotions alongside supporting Randi's health and well-being required a delicate balance. There were moments where I grappled with feelings of resentment, as I previously mentioned. Nevertheless, I wasn't overly preoccupied with seeking attention during my childhood. My parents skillfully ensured that even when Randi was hospitalized or feeling unwell, one of them would be available to spend time with me and provide the necessary attention. Additionally, my older siblings, particularly my sister, played a significant role in entertaining and engaging with me while I was young.

Were there any misconceptions or misunderstandings about IBD that you encountered while interacting with friends, peers, or others outside your family? How did you handle these situations?

When interacting with friends, peers, or others outside my family, misconceptions about IBD did arise. Not among my friends, but I distinctly remember encounters where other individuals outside our family believed that adopting a new dietary trend could miraculously resolve Randi's challenges, or they trivialized the gravity of her Crohn's by simplifying it as a mere bathroom concern. I didn't handle these instances directly as a child, as one of my parents would usually step in. If I were to address them now, I'd aim to strike a balance between rectifying these misunderstandings and maintaining a positive, informative tone. I recognize that people generally mean well, yet there's a need to educate about the reality of IBD. I might suggest referring them to resources like IBD Connect and Emily's Gut Check for accurate information. While I was growing up, I never felt as though there was any tension or stress about IBD with my friendships. Both Randi's friends and my friends were at our house often. I feel as though they absorbed a lot of information about IBD just by being immersed in our home. Because Randi was diagnosed at such a young age, both of our friends grew up with a pretty accurate understanding of IBD from a young age. We never tried to hide anything about IBD from our friends, and we would answer any questions they may have had openly and honestly.

Overall, how do you feel as though Randi's diagnosis impacted your childhood experience? Did you experience any stress or anxiety related to Randi's condition?

Reflecting on my childhood, Randi's diagnosis did impact my experiences. The urgency to locate restrooms whenever we ventured out and the tension during flare-ups or unfamiliar outings stand out as sources of stress. Despite this, I don't believe I missed out on childhood pursuits due to Randi's IBD. Our parents made considerable efforts to ensure both of us had fulfilling experiences. Early on especially, the stress was palpable but manageable for our family.

In what ways has Randi's, and now Jaimee's, resilience and strength in facing IBD influenced or inspired you?

It has inspired me to be an advocate for those suffering from illness or disability. I feel as though much of the reason I am drawn to working with children with autism and advocating for them is because I saw my parents doing this with Randi and her IBD. Her experiences, especially with all the misconceptions and stigmas about the disease, highlight the need to advocate to spread accurate information, reduce stigmas, and provide support to those suffering. Seeing her do this, as well as my mom through IBD Connect, has definitely left its mark on me.

What advice would you give to other siblings who are currently navigating similar challenges with a sibling diagnosis of IBD? What advice would you give to parents of multiple children, one child having a diagnosis of IBD?

To fellow siblings navigating the challenges of a sibling's IBD diagnosis, I'd advise them to educate themselves about the condition. This knowledge will enable them to offer effective support and foster greater empathy. Listening, communicating, and expressing empathy to the sibling with IBD is crucial, creating a peer-based bond that complements parental support. Flexibility and practical assistance during flare-ups or medical appointments also goes a long way. Emotional support is equally vital. Lastly, maintaining one's own well-being is essential. While the demands of the sibling with IBD can be consuming, spending time with family and friends during the sibling's healthy periods helps preserve emotional balance.

For parents with multiple children, one diagnosed with IBD, I'd encourage open communication among all siblings. Avoid becoming so engrossed in managing the child's IBD that the other siblings' needs are overlooked. Offering individual attention to all children and diversifying the interactions with the sibling with IBD, beyond the context of the condition, is beneficial. Building a unified family environment that nurtures empathy and validates emotions is essential. Initiating family time unrelated to IBD serves as a strong foundation for this approach.

This concludes our interview. It is my hope that you are able to find some peace knowing that Bryce currently has healthy relationships with his parents and siblings. An IBD diagnosis in the family is certainly a challenge, but it is possible to work together as a family unit to overcome these challenges by communicating feelings and needs with one another. If you are looking for more information or would like to receive support, please feel free to contact me. My email is linked at the bottom of this page. Even though today's post was not clinically heavy, I still want to remind everyone not to use this page as a substitute for a professional medical opinion. For more detailed information regarding IBD or if you have questions pertaining to your child's individual treatment plan, please seek out the professional medical advice of your child's doctor. Before we wrap up this post, I want to give a huge shout out to Bryce. His eagerness to participate in this interview speaks volumes about the heart he has for supporting this cause! And as always, stay strong IBD Warriors/IBD Warrior parents!