Having your body at the center of ongoing medical scrutiny is not the ideal situation in which to develop an individual and autonomous body image. We make room for scars and side effects, sometimes feeling as though who we are (and who we want to be) shrinks more and more. Developing a positive sense of self and body image is something every kid must face, but especially when it comes to IBD there is a role for everyone to play.

Since IBD is an autoimmune illness, it becomes complicated not to blame yourself when it’s actually your body’s fault, not yours. Girls tend to focus on what their bodies look like (e.g. - feminine) while boys tend to focus on what they can do (e.g. - run a mile). Medications like Prednisone can bring body image issues to the forefront, and this is an important opportunity for parents, family members, and the care team to rally around the child. For instance we might try diminishing reliance on weight as the marker of health and instead consider an activity that is valuable to the child and assess health by how improved their ability to do that thing is (instead of a 5 pound weight gain or loss being the marker for success, being able to go to school for a whole day would be the marker for success).

Forgo the black and white thinking of underweight or overweight, and remember that relationships with our bodies are things that we deal with our entire life (IBD or not). Help your child take ownership of their body - encourage them to try a sport or treat them to a haircut or a manicure.  Do things that help a child develop a healthy relationship with their body and learn to respect it. Listen to your child’s concerns and validate them, even if you don’t think your child looks heavy, if he or she expresses feeling fat, talk about it, let them know you’re there to listen. If your child prefers a certain style of outfit or clothing to make them feel more comfortable, jump on the bandwagon and go with it.

Sami and I collaborated with PAC members Alex and Moriah to create a list of tips for helping your child or patient cope with body image concerns that may arise as a result of treatment. The personal pronouns that follow may refer to one or more of us.

Surgery/Ostomy: I truly believe that I can wear what I want and that no outfit will ‘give away’ the fact that I have a bag. I see my ostomy as something tremendously positive (part of that comes from how I talk about it, part of that comes from the supplies I use [some supplies are more ‘medical’, some more like ‘undergarments’]). People with an ostomy might think the looser the better, but in all reality I find that wearing things that hug the body is better - that way the bag doesn’t bop around but stays in place. Even if your child has a temporary ostomy, err on the side of positivity and encourage that kind of self-talk. Personally I don’t use special underwear or anything different, I just tuck my bag into some leggings and I’m all set. That said, for an interview once I didn’t want to be patting the bag making sure it wasn’t swelling, and used special ostomy underwear to keep things locked and loaded. There are special items if your child feels it is important, but ultimately I think the most important thing is feeling good about the ostomy and having a supportive environment to talk about it.

Calm, Cool, and Collected: For a lot of families dealing with a chronic illness, talking about medical decisions is inherently a tense topic. As I say to my parents, “I feel badly that you feel badly that I feel badly.” It’s sometimes tough for kids to bring up issues they have around their disease when they know it will make everyone upset. Reassure your child - I know it can be hard to talk about things that are bothering you, whether they be about your illness or not, but I am always here and want to support you - and mean it. Make time to talk, go out of your way to be available. By making it an everyday and ordinary topic, your child will feel more comfortable sharing and it will feel less stressful.

Spoonful of Sugar: It seems silly in hindsight, but when I went on Prednisone in the 8th grade, no one reminded me I wasn’t at my final weight destination yet. Kids are growing and still need to gain weight, and as such, weight shouldn’t be the enemy. They shouldn’t be fighting for one specific number. Start healthy conversations around weight and eating to be strong. Don’t count calories. Remember that our bodies need fat and sugar. Involve your child in planning meals and going grocery shopping. Try pulling out a weight chart to show your child that they’ll reach their final weight in a few years; they’re still growing and should enjoy eating.

Take Off the Weight: No matter how supportive you are at home, your child will probably feel self-conscious around their peers. On Prednisone, even though I didn’t gain much body weight, my cheeks definitely attained ‘chipmunk’ status. I was frustrated by it - it was one more thing I didn’t have control over. I was sick and as a result I was extremely thin; I’ve never been more dissatisfied with my body. I was in middle school then, and kids at school used to whisper behind my back and ask me to my face if I was anorexic. That hurt because they didn't have any idea what I was going through and were quick to stereotype me because of the way my body looked. Bullying can unfortunately be a real issue for children with IBD, especially those on steroids. At home, try to foster confidence in your child and encourage a positive self-image as much as possible. Remind your child that they are beautiful and make positive comments about all different body shapes and sizes to model acceptance. Compliment your child on outfit choices and school accomplishments. Take the pressure off of how your child looks and focus on what your child does.

Comedic Genius: At the end of the day, disease or not, your child is a kid. Don’t forget to do fun things, laugh, make jokes, and have fun. Follow your child’s lead - for example, I tend to deal with my disease by being sarcastic. Tap into how your child expresses themselves - you could give them paints if painting is therapeutic, or host a family karaoke night if singing helps them relax. Do whatever it takes to help your child process their frustration. If it takes your child telling the surgeon that they would like to have a scar from surgery in the shape of lightning bolt on their tummy so they can be Harry Potter, roll with it (yes, I am speaking from experience)!

Think Before you Speak: Nix words like ‘fat’, ‘calorie’, ‘weight’, ‘side effects’ and replace them with ‘feeling strong’, ‘healthy choices’, and ‘fuel for your body’. Try saying ‘your body’ instead of ‘you’ (e.g. - Instead of ‘You are having side effects from Prednisone' try 'Your body is adjusting to the medication you’re taking to help make you feel better'). Remember that your own self-image is likely to influence your child's self-image. We all have been dissatisfied with our bodies at one time or another, but being aware of what you say about your own and others’ bodies in front of your child in very important. It's important to not only deliver the message that everyone is beautiful, but to deliver it with authenticity. Make sure your child knows no matter how they look they are perfect just the way they are. Their differences make them who they are and are something they should take pride in. In the end, Crohn’s and colitis shapes the patients it touches. It gives them battle wounds, stories, chipmunk cheeks, times on the royal throne, and poop conversation topics galore. Each of these things is something to take pride in and help make your self-image stronger.

Control Freak: When you don’t have control over your body, it’s important to feel like you have control over something. Encourage your child to choose a family movie or help you pick an outfit for an event. If your child is interested, get involved in an organization, participate in a fundraiser, and let them take the wheel for a bit.

At the end of the day, no disease or medication has the power to change the identity of your child (or patient!). In a society where we have a tendency to associate so much of 'who we are' with physical appearance, changes in physical appearance can be some of the roughest transitions forced on IBD patients - but together, we can make them less difficult and stay focused on what is really important.

In the words of PAC member Moriah, "My dad remembers me telling him in 8th grade that although I couldn't do a thing to change how I looked outside, I was determined to be the most beautiful person I could be on the inside. Life isn't about looks. I hope that in my life I have spent many more hours thinking about others than I have spent looking in the mirror. That's empty if my identity and beauty come from obsessing about how I look. My idea of beauty is having a secure, inner beauty that no one can take away.”


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