A New Rhythm
Harlow is entering her senior year of high school at Northern Valley Demarest. She is 17 years old and grew up in Demarest, New Jersey. Harlow loves dancing—whether hip-hop or ballet—and spending time with her friends and family. She was recently diagnosed with Crohn’s disease, a chronic illness that causes inflammation in the digestive tract. Harlow spoke about the emotional and practical challenges of adjusting to her diagnosis, which you can read about below.
BTL: How does Crohn’s disease affect your life academically and socially?
H: Academically, it has affected me because I have had to miss a lot of school. I especially missed many days while I was being diagnosed because I needed so many tests, and most of my hospital appointments took place during the school day. Missing so much school added another layer of stress on top of an already stressful junior year.
BTL: Does living with Crohn’s ever discourage you?
H: At times, it can be very frustrating, especially when I feel like my medicine is not working. However, my ambition and desire to succeed have not wavered at all. It has not really affected my confidence or motivation, but when you do not feel good physically, you sometimes feel like you do not look good either. In that sense, it has affected my confidence a little, but it has never made me less motivated.
BTL: Have you adjusted to living with this illness?
H: No, not yet, but I was only diagnosed four months ago. My treatment plan has changed so many times, and I am only now beginning to settle into one. My medicine is not working yet, which can make me feel extremely frustrated and helpless. It is difficult knowing that I am doing everything I am supposed to do and still waiting to feel better.
BTL: What do you think it will take for you to feel more adjusted?
H: I think I will begin to feel adjusted once I start feeling better and my flare-ups become less frequent. Right now, it is hard to adjust because I still do not know exactly what feeling “normal” with Crohn’s will be like for me.
BTL: Has Crohn’s affected your ability to dance?
H: It has, mainly because I cannot take anti-inflammatory medications like Advil or Aleve. That makes it really difficult to manage the normal soreness and pain that come with dancing because I cannot do much about them. I use heating pads all the time. Even with something like period cramps, I have to push through the pain and rely on a heating pad because that is really my only option.
BTL: How do you feel knowing that this is something you will have to manage for your entire life?
H: It is honestly crazy to think about. I am so young, and it is hard to understand that this is something I will have for the rest of my life, no matter what. It is a strange feeling to know that this will always be part of my life, even though it has only been part of my reality for four months.
BTL: Has managing Crohn’s become part of your routine yet?
H: Some parts of it have. When I was taking pills every day, that became a routine, but my treatment has continued to change. I am doing what I need to do every day, but I am still not completely used to the fact that this is now my routine.
BTL: Is there anything you wish more people understood about Crohn’s disease?
H: I wish people knew that Crohn’s can involve so many different symptoms and affect much more than people realize. Many people also do not know that I cannot take Advil, which makes it much harder to manage other kinds of pain. Crohn’s is not commonly understood in general, and people do not always realize that it can also weaken your immune system.
BTL: How has Crohn’s affected your eating habits?
H: At first, I thought I had celiac disease, so I was gluten-free. It was not until I was tested that I learned I actually had Crohn’s. There are still foods I have to avoid, including processed foods, popcorn, seeds, and grapefruit. It has not been a huge shift, but I have had to rewire my brain not to eat foods I used to eat without thinking. For example, when I go to the movies, I cannot eat popcorn with my friends, even though that is such a common and simple snack. It is not necessarily upsetting, but it takes time to get used to. At the same time, I am thankful that I can eat bread again. After going through the process of thinking I had celiac disease, I am grateful that my diet is actually less restricted in some ways.
BTL: Does living with Crohn’s cause you anxiety?
H: The disease itself does not cause me anxiety, but the treatments do.
BTL: What does your treatment involve, and why does it make you anxious?
H: I am terrified of needles, so I become really scared before my infusions and having an IV placed. I go to the hospital, where they take my vitals and order my medication. The medicine arrives in an IV bag, and they put the IV into my arm while also taking blood. Then, they connect the medicine, and I sit for about an hour while it is infused. Afterward, they use a saline flush to make sure all the medication has moved through the tube. At first, I could sometimes feel the medicine going into my arm. I can also feel the saline because it creates pressure. Since I am so afraid of needles, I have a child life specialist who helps me through the process. Crohn’s itself does not make me anxious; it is knowing that I have to face the needles and IVs as part of treating it that scares me.
