Q&A: Maintaining Positive Body Image
Inflammatory bowel diseases (IBD) can impact how you view your body. In this Q&A, Kalee and Grady share their personal experiences with body image.
How old were you when you were diagnosed with IBD?
Kalee: I was diagnosed with Crohn's disease when I was 17 years old, around the time I was getting ready to graduate high school, move away from home to college, and transition from pediatric to adult care.
Grady: I was 18 years old and in my first freshman semester at LSU when I was diagnosed with ulcerative colitis. It was difficult adjusting to a new lifestyle and new living space while dealing with illness. Getting sick at the beginning of young adulthood really forced me to focus on my health— mentally and physically. It was, and still can be, difficult to manage personal expectations and expectations of your peers. Ultimately, I think I've gained a better understanding of my needs and my limitations.
How did you feel when you were first diagnosed?
Kalee: I felt extremely overwhelmed when I was first diagnosed. I remember everything about the phone call from my doctor, where I was standing and almost dropping my phone when I heard her say the words "You have Crohn's disease." I felt so alone in my IBD journey, having to manage my health and the financial burden it can place, navigating social situations with IBD, and figuring out how I was going to succeed in work and school when my disease was still very active.
Grady: When I was first diagnosed, I felt isolated. I was surrounded by students who seemed to be in a completely different world than I was. On top of that, it was easy to feel stuck in bed and focus on the four lonely dorm walls around me. Luckily, I had an incredibly supportive roommate who stuck by my side, even when I puked on our floor at 4 a.m.
When you have a flare, how does it change how you view your body?
Kalee: As a type-A personality, one of the hardest parts of being in a flare is the control I feel I've lost over my life, with one of the major components being body image. During a flare, I have the tendency to lose weight. I've required advanced nutrition support— feeding tubes—and at times help from a central line. It's hard to cope with these changes and explain what’s going on to peers. The weight loss can be extremely hard to come to terms with too because it's occurring despite my best efforts and serves as a reminder that, at times, my disease is calling the shots. Lastly, steroids have affected my relationship with body image as well- the weight gain, hormonal fluctuations, and "moon face." The hardest part for me is finally feeling better with steroids, but my health coming at a cost. I struggled in school comparing myself with all the young adults I was surrounded by and what was being posted on social media. It became toxic at times.
Grady: When I'm flaring, my perspective on my body and my identity shifts. I feel run-down, defeated, weak, and flawed. It's hard not to make comparisons between myself and my peers. I think that IBD and chronic illnesses still have a stigma that can cause negativity, fear, and resentment. As a result, it's easy for me to fall into a pit of self-doubt. I worry about my health and my image. I feel dirty and flawed. Most of all, I just feel different. My standards between who I am when I am healthy and when I am sick are warped. All in all, it's challenging during a flare because there's a mismatch between my mind and my body. I feel stuck, sick, and trapped.
How does the way you view your body affect other aspects of your life?
Kalee: Body image has definitely affected my mental health and my interest in attending social events, being in relationships, and engaging with friends and family. I often projected what I was feeling onto others, assuming others would readily notice my insecurities. Finding a good support system really changed my perspective.
Grady: It's easy to make comparisons between myself and other young adults. In school, I wonder why I'm so fatigued and why I can't fully commit to a college lifestyle like others. It takes me a longer time to recover than others, and I often have to miss out on things. I have to prioritize my health and cut out excess distractions to stay well. With my family, it's easy for them to feel concerned about my health. Sometimes I feel guilty about letting them worry about me, so I try to be clear and honest about how I'm feeling with them. It's a balance because there are also things I'd prefer to manage on my own. With activities and the social world, sometimes I have to skip out. If I'm not feeling well or feel like an activity will make me feel worse, I have to make the difficult decision to cut it out. In all relationships, IBD forces me to set clear guidelines with others so I'm able to thrive while still living up to their goals for me.
What do you do to try to keep a positive body image? Do you do anything differently when you have a flare versus when your IBD is under control?
Kalee: I try my best to be in control of whatever I can be- whether it's eating a certain way, making sure I get enough sleep, managing my stress/time, etc. When there are things out of my control, like changing body image during times of a flare, it can be disheartening. I try to remind myself of what I can do to be proactive and what I still have control over. Instead of getting upset over comments being made about changes to my body, I try to use them as teaching opportunities about my IBD and how it affects me.
Grady: When I'm flaring, I try to maintain a level of activity. It doesn't have to be anything crazy or intense, just something to keep me grounded. I like to do some form of exercise, preferably outside if I can, to escape the isolation of being at home. Sometimes it's a walk or juggling at the park. Other times it's a light workout at home or simply stretching. The point isn't to push myself to my limits but rather to take a step back and breathe for a moment. I think movement really helps me refocus and reconnect with my body. Meditation is helpful too. Oh yeah, and I drink plenty of water, or at least try to! :) The main difference between my activity when I'm flaring and when I'm not is adjustment. I adjust my expectations and try to be more tolerant towards myself. If I need to spend a day curled up in the covers, that's cool. If I need to scream into a pillow, that's fine as well. The important thing is that I engage in things that are productive, not in the sense that I'm getting a lot done in them, but rather in that they build me up, and not destructive.
Has anyone in your life helped you keep your body confidence up?
Kalee: I have some amazing friends and family who have really been there for my time in needs regardless of distance. My parents have been incredibly supportive throughout my IBD journey and are always there if I need to talk through some of my concerns. True friendships and healthy relationships are the ones that stand the test of time and changes in health and build you up when you are feeling insecure. On deeper issues with how my IBD has impacted me, I have gone to therapy in the past to work through issues like body image and for help to achieve a healthier relationship with my mental health. I also joined a support group. Connecting with other IBD patients has changed the way I approach my IBD journey and gain confidence.
Grady: I've been EXTREMELY fortunate to have surrounded myself with a group of friends who are incredibly supportive. They're willing to engage with me and include me in everything, and they don't treat me like I'm sick. In fact, when I'm with them, I can tell my presence is appreciated, which makes me feel great. At the same time, they understand that I live with a disability and they work with me on that. They know that I may not have the energy or the capacity to fully engage all the time, and they respect that. They're willing to give me space and to compromise with me. Having them with me is a huge source of relief and strength.
Do you have any advice for other young people with IBD for how to keep a positive body image?
Kalee: You are not alone in what you are feeling and your IBD does not define you. It's a small part of who you are. The changes that your body is experiencing are just a testament to the strong fight you are putting up. It's so easy to compare how you are feeling and how your disease is affecting body image with others but it's because of my disease that I'm at where I am today. It's brought on some of my toughest battles, but it's also taught me so much about myself and the career I'm pursuing in healthcare, so I try to let any changes in body image be a reminder of that instead.
Grady: My advice to others is to be kind to yourself. I know that can be incredibly hard, but it's important. The truth is that we are all struggling with different things, and we are all successful at other things. Realize your worth and own your strengths. Realize that you don't have to be perfect and, in fact, it's better to be imperfect. Imperfection is just another word for unique traits that help you stand out. You are powerful but take time when you need it to reflect and recover. Do what makes you happy. Cut out what makes you unhappy. Most importantly, share your story.