Then and now: I won’t be defined By my Crohn’s disease

The challenges of inflammatory bowel disease (IBD) are no match for Maya, who was diagnosed with Crohn’s disease at age 9. Harnessing her inner strength and the support of friends and family, Maya shares how she took control of her life and began living it to the fullest in this letter of advice to her younger self:

Dear Maya,

It’s hard being a 9 year old – friendships can be confusing, little brothers can be annoying, and teachers are already saying “you have to be prepared for middle school!” It’s even harder to be a 9 year old with inflammatory bowel disease. Believe me, I understand. I’ve been there.

At first you felt sick and didn’t know why. Then it started getting worse. Feeling tired and weak, enduring stomach pain, struggling to eat anything at all – these are not things that “normal” 9 year olds experience. And I know all you want is to be “normal” – to not have to deal with any of these things. I know you lie awake at night and think “why me?” I know you’re scared. I also know that you’re strong and capable of incredible things.

The frequent doctor visits and tests are scary – drinking strange liquids and lying still while a big machine scans your body, or listening to the doctor say, “your SED (sedimentation) rate is high” with a concerned look on her face. It feels like life has become full of unknowns, but I know you have the strength and courage to face it. Remember when you had to get your first real blood test? You kicked and screamed the whole car ride, and then you walked through the doors of the doctor’s office with your head high and didn’t shed another tear while the phlebotomist drew your blood. You knew that you had to conquer the fear, and you did. Part of being alive is having to do things you really don’t want to do sometimes, and you had to learn this lesson earlier than most.

But now the many tests are behind you and your sickness has a name: Crohn’s disease. And now you can work on feeling better.

You have strong advocates in mom and dad, and a loving community supporting you – let them help and give you strength on days when it feels hard to find it within yourself. Your mom knows what it’s like; she has Crohn’s disease, too. Remember when you had to learn how to swallow a pill for the first time? She sat with you for hours, through the frustration and exasperation, trying different ways to help it go down – ice cream, apple sauce, yogurt. Eventually, you did it! And once you overcame the unusual sensation, you figured out how to swallow pills all by yourself.

Finding the right treatment and trying different combinations of medicines can feel like a rollercoaster, and I understand it’s tiring. Sometimes you begin feeling better and hopeful, only to be let down by a flare up a week later. Hang in there for a little while longer, because it will get easier. Scientists have been working hard to understand inflammatory bowel disease and how to stop it in its tracks. With new developments in medicine, your options will improve and the days of trial and error will be over. You will find a treatment that works for you and allows you to do everything you hope to - from playing on the varsity field hockey team to traveling to New Zealand!

Talking about your illness with friends or classmates feels strange, and I know you prefer not to tell anyone. I know you don’t want to call attention to yourself, and it’s stressful to have to tell teachers when you need to leave class. It seems like nobody would understand, that they would think you’re weird and even contagious. It feels like you’re the only one, like it’s taboo to have a disease. Let me share a little secret: when it comes to health conditions, almost everyone’s got something they’re dealing with. Not everyone has an autoimmune disease, but as you get older, your peers will relate to you with their own health-related challenges and it will get easier to discuss openly. Public awareness and understanding of both IBD and autoimmune disease will increase as you get older, and this too, will help you connect with others who are going through similar difficult experiences.

Now here’s the important part, so pay close attention: as you get older, the two most valuable lessons for you to learn will be self-acceptance and self-care. Right now, you may want to leave the understanding of the disease and the decision-making to your parents and to ignore the illness when you’re feeling good. But Crohn’s disease will be with you for most of your life, and to love your whole self, you must accept it as a part of you. The challenges, the fear, the frustration will shape you into the kind of person who can move across the country from Boston to San Francisco without knowing anyone, the kind of person who can choose to change career paths and follow their creative passion.

Accepting that Crohn’s disease is part of who you are will help drive you to learn more about the disease, to learn how to be an advocate for yourself and to seek out the best ways of caring for your health on a day-to-day basis. And with the progress of science, there continues to be promising research that I’m hopeful could make a difference in your life and in the lives of others like you.

My final advice to you is listen to and honor your inner voice, because you have so much more wisdom and strength than you know.

With much love and confidence,
Maya

Maya W. is a writer and creative professional living in San Francisco. She works as a health communicator, drawing on her personal experiences to help improve understanding and bridge the divides across different aspects of the health care sector. Currently, Maya is focused on expanding on her love of storytelling through film. When she’s not at her desk, she can be found exploring the redwoods and beaches of northern California and volunteering for local film festivals.

Florian Dieckmann
Email: florian.dieckmann@abbvie.com
Call: + 1 847-937-2296

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