Supporting an IBD Warrior: My Personal Experience

Welcome back to Emily’s Gut Check! If you are already familiar with my blog, you know that I primarily gear my writing to parents of children diagnosed with IBD. While I hope that this blog is a useful tool to support anyone affected by IBD, my overall goal is to equip, educate, and encourage parents especially as they navigate their child’s IBD journey. I attempt to write blog posts that draw on both my professional experience as a registered nurse, as well as my personal experience as a close friend to an IBD warrior. Today’s post is near to my heart, as I want to focus on the latter and share my own personal experiences supporting a friend with IBD. At first glance, this post may seem to be geared only towards friends of IBD warriors, and I truly do hope that friends, siblings, extended family, and other acquaintances will benefit from my perspective. However, I am hopeful that if you are a parent reading this page, you may be able to gain insight on a different facet of your child’s life that you may not see as often: their friendships! You also may choose to share this information with people who approach you with questions on how to interact with your child after an IBD diagnosis. Or, if it is age appropriate, you may choose to use the information on this page to engage and coach your child in growing or maintaining their own friendships after an IBD diagnosis. In short, parents may not be able to relate to this post in the same way as my previous posts, but I’m optimistic that something will still be gained by sharing my personal story. I’m excited for the IBD Connect community to gain a little more insight on how my experiences helped to shape the vision for Emily’s Gut Check.
 
Before we begin, I wanted to mention a few housekeeping items and disclaimers. First, if you are new to IBD Connect or to Emily’s Gut Check, check out our main website and our support group page that are linked at the bottom of this page. If you have any questions or need further assistance, please reach out to me or to one of the other IBD Connect team members. My email address is linked at the bottom of this page. Also, feel free to read over my previous blog posts for more information about the blog itself and about all things IBD of course! Second, while this post is not heavily medical or clinical like some of my previous posts, please still note that the information on this page is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Please seek the medical advice of your child’s doctor for questions pertaining to your child’s condition or for more detailed information on the topic of IBD. Third, as you read this post, I want you to keep in mind that this is my own personal experience supporting an individual diagnosed with IBD. Every individual with IBD is different, and some of the tips or tricks that I will share may not be beneficial for everyone. This post is intended for general guidance only. If you feel as though professional medical, psychiatric, or physiological help is necessary for you, your child, or a friend, please seek out the necessary professionals, such as a medical doctor, psychiatrist, or licensed therapist for assistance. Now let’s dive in!

Background 

To begin, I wanted to just provide a brief overview of my relationship with Randi Renfro, Lisa’s daughter. Randi was diagnosed with Crohn’s disease at a very early age. She is very open to discussing her diagnosis and the impact it has had on her life, and she has given me permission to discuss her story a little more in this post. If you’ve been following my blog, you know that I have actually interviewed Randi for one of my blog posts. Randi provides a great overview of her IBD journey, starting from her diagnosis at a very early age and ending with her career as a registered nurse. In the interview, we discussed how IBD impacted her physically, emotionally, mentally, and socially, and we covered topics like dating, friendships, 504 plans, and college. The link to Randi’s interview is at the bottom of this page for those of you who are interested in taking a look.
 
I met Randi while we were both in middle school. We were in the same grade, and we had many of the same friends so we would occasionally interact in school, but we were not very close. While in middle school, I had noticed some things that seemed to make Randi “stick out” from our peers. For example, I noticed that Randi seemed to miss a lot of school. I also noticed that if we were going on a class field trip, usually one of Randi’s parents was a chaperone. I know a lot of parents worry about their child with IBD not fitting in or “sticking out” from classmates. I cannot speak for every child, but I can confidently tell you that personally, these differences did not leave much of an impression on me. I’m not saying that I didn’t notice differences, but I wasn’t focused on them. And they certainly did not change how I interacted with Randi. I do not remember a specific moment in which I learned that Randi had Crohn’s disease. There certainly wasn’t an earth-shattering, lightbulb moment in which everything about Randi’s differences made sense. I’m not even sure if I found out from her or if I casually heard about it through other friends or classmates. I definitely remember that I knew she had Crohn’s disease before we entered high school. However, at that time, the phrase “Crohn’s disease” did not mean anything to me. I had a vague understanding that people with Crohn’s disease needed to go to the bathroom more and were frequently tired. That was the extent of my understanding before entering high school.
 
When high school started, Randi’s main friend group and my main friend group essentially merged, and suddenly Randi and I were hanging out in group settings much more frequently. I remember that Randi was usually open to talking about her Crohn’s disease. She would crack a “poop” joke or mention she had an infusion coming up. Crohn’s was typically discussed within our friend group in a casual manner. We didn’t shy away from the topic, but we didn’t talk too deeply about it either when we were in a group setting. Towards the end of high school, Randi and I started to hang out more individually, separate from our friend group. We have a lot of similarities in terms of personality, world view, and interests, and thus, our friendship organically blossomed. We were both interested in becoming registered nurses, which was a shared goal that really bonded us. As our friendship grew, I began to learn more about how Crohn’s disease was affecting Randi. She would talk more openly and deeply about her feelings. Because I was also now interested in Crohn’s disease from a medical perspective as well, I began to do a lot of research on IBD. I didn’t want to be ill-equip at helping Randi process her feelings or be lost in a conversation about a medical concept that I didn’t understand. I wanted to be there for her. Eventually, we became extremely close, and Randi would talk very openly about her feelings in terms of Crohn’s disease with me. We both went to the same college for nursing and graduated together. I actually married her older brother post-graduation so we are now sisters-in-law!

Practical tips

Now that you know a little bit more of my backstory with my friendship with Randi, I just wanted to share some practical tips for how I personally went about supporting her as she navigated her IBD journey. Please keep in mind that if you are a friend of an IBD warrior and reading this blog post for advice, everybody is different. What works for Randi, may not work for your friend. These are just general suggestions. Open, honest communication is always best to determine how your friend wants to be supported.
 

• Take time to learn about IBD. I think something that really made a difference in my journey supporting Randi as a friend was taking the time to really research IBD. In my case, it helped that I had an interest in becoming a registered nurse so learning about different diagnoses was already fascinating to me. Leaning about IBD helped me to build confidence in talking with Randi about her disease. Gaining knowledge in this topic definitely made our conversations about Crohn’s disease go more smoothly, and it really helped me to appreciate the depths of what she was battling.
• Don’t offer unsolicited advice. Some people feel the need to offer their personal opinion or advice for handling IBD. I found that this can be upsetting for the diagnosed individual. Usually, the advice is coming from a place of ignorance or lack of understanding, which can lead the diagnosed individual to feel isolated and misunderstood. For example, do not offer diet advice or opinions on potential “cures” for IBD. There is no cure for IBD, and suggesting that there is one can lead to emotions ranging from mild annoyance to feelings of anger, hurt, or loneliness. For more information on myths regarding IBD, you can check out my last blog post! In general, just stay away from sharing your opinions, especially if you haven’t done any research. The individual with IBD has a whole team of doctors and healthcare providers they can turn to for advice. What they need from others is support and encouragement.
• Don’t be afraid to talk about the IBD diagnosis. As previously mentioned, everyone is different. More often than not, however, I find that treating an individual’s IBD diagnosis like taboo is not the best approach to curating a supportive friendship. Some individuals with IBD enjoy talking about their diagnosis or answering questions because it helps them feel as though what they are going through is real. It can be validating. So ask appropriate questions and engage in meaningful conversations! To Randi’s credit, she set a tone that made me feel comfortable bringing up IBD in casual conversation; she never kept her diagnosis a secret. As a warning, I will say there is a difference between casual conversation about IBD between friends or even in a group setting versus a serious heart-to-heart conversation about innermost thoughts and fears. Please use discretion and follow their lead!
• Take their cues. I know I mentioned in the previous tip that you shouldn’t be afraid to bring up IBD in conversation, however, you should also follow your friend’s cues in doing so. For example, if your friend is dodging questions about IBD or doesn’t seem fully engaged, maybe it is time to drop the topic. They may be feeling especially fatigued that day or maybe IBD is all they have been thinking about lately, and they would rather be distracted with something fun. An individual with IBD is so much more than their diagnosis and sometimes their diagnosis is the last thing they want to think about! In general, don’t be afraid to bring up the topic of IBD or ask questions, but take your friend’s cues and know when to change topics.
• Use humor. Some individuals with IBD really appreciate humor in light of their diagnosis. With Randi, I find that using humor and making some “poop” jokes can really lighten her mood. Of course, you have to be able to read the situation and use humor when you feel as though it is appropriate!
• Give them space to talk and share their feelings. Sometimes all a patient with IBD wants to do is vent. You can provide your friend a safe space to share their feelings openly and honestly without fear of judgement. When Randi feels like venting, I often find it is best not to try to “fix” the problem. I realized rather quickly that there was no way that I could possibly “fix” her Crohn’s or any of the inconveniences that come with Crohn’s. If Randi happens to ask me for practical solutions to a problem, that is when I share my opinion or offer my perspective. Sometimes though an IBD patient just wants someone to truly listen to them and commiserate with them. Be that person!
• Don’t belittle IBD by comparing it to IBS, food intolerance, food allergies, etc. I personally have IBS so I can attest to the fact that IBS and IBD are definitely not the same. This ties back into being willing to educate yourself on IBD! IBD is so much more than just a “poop” disease. For more information, you can check out my former blog posts on IBD and myths regarding IBD. I’m not saying that IBS or any other disorder is easy, but IBD is in a different realm.
• Give them grace. If your friend needs to cancel plans last minute or maybe forgets something that was important to you, please give them grace. Your friend may be battling symptoms like fatigue, pain, diarrhea, etc., and it may have hit suddenly. Do not judge your friend for cancelled plans. They are juggling a lot at once and chances are they feel absolutely horrible for cancelling last minute. Give them assurance that you will not abandon the friendship and let them know you are there for support and encouragement.
• Keep them in the loop if they are missing an event. Spend time with them. This one applies more so to individuals who are still in school. I remember filling Randi in on the details surrounding meetups with friends or school events that she may have had to miss due to Crohn’s. It would help her feel more connected to the friend group or to a particular club or event at school. IBD can be extremely isolating! It is for this reason that spending intentional time with them is also a great way you can support your IBD warrior.
• Be honest. In order to be a supportive friend, you should be an honest friend. If you do not know how to be supportive or what your friend needs at any given moment, just ask! There are several times that I have asked Randi: “What do you need from me right now in this moment?” or “Would it help if I did this?” If your friend starts talking about IBD and you aren’t sure about how a medical test will be performed or what the side effects of a new medication are, just ask! Chances are, they would be more than happy to fill you in on the details. If not, apologize for misreading cues and/or overstepping boundaries. In general, I have found that having an honest, open dialogue regarding IBD is one of the best ways that you can be a supportive, encouraging friend.

 
The above tips are meant to be general guidelines for supporting a friend with IBD. If you do happen to develop a close friendship with someone affected by IBD or someone you were already close to was recently diagnosed with IBD, you can take these practical tips and then curate them to fit that individual’s needs. For example, in high school Randi was on a medication that required hospital infusions. One of the ways I spent time with her intentionally and showed her support is by accompanying her to infusions occasionally. We watched movies, played games, and talked during infusions. Sometimes she would nap, and I would catch up on homework or read a book. I also think it’s worth mentioning that the more time you spend with the individual, the easier it will be to determine how they would like to be supported. You’ll feel more confident in determining when you should be a shoulder to cry on, when your friend needs to vent, when they want to talk about anything other than IBD, or when using humor is appropriate. I found this was true with my relationship with Randi. The closer we grew as friends, the more I could appreciate how Crohn’s affected her everyday life and the more I grew to understand how she wanted to be supported. In closing, there are so many ways to practically support a friend with IBD. Every individual is unique, and the best way you can grow in supporting an IBD warrior is by honest, open communication. I included a video below where a Crohn’s patient explains ways that she feels supported by her friends. I included this video to give perspective on this topic from an actual IBD patient. Just keep in mind that every IBD patient is different!

I hope you enjoyed my personal story and the practical tips that I’ve learned  over the years as I seek to support Randi and her diagnosis. Feel free to leave any other practical tips or suggestions for support in the comments below! If you have any questions or have any ideas for future blog posts, please don’t hesitate to email me. As always, stay strong IBD Warriors/IBD Warrior parents/IBD Warrior friends!

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Randi's Interview

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