You don’t know me, but nine years ago, I was you. When I was first diagnosed with ulcerative colitis (UC), I was so ashamed that it almost cost me my life. I was too mortified to let anyone know, so I carried around this big, dangerous secret. I hoped every day that my symptoms would stay under control so that nobody would ever find out about my illness.
I didn’t want people in my life talking about me and that fact that I had a “pooping” disease. But the longer I went on hiding my UC from others, the more powerful my shame became. I projected all the negative feelings I had onto others. Because of my shame, I believed that everyone else would think I was gross and unlovable.
It doesn’t have to be that way for you. You can learn from my mistakes. You can educate yourself about your condition and enlighten those around you. You can choose to make peace with your diagnosis instead of hiding it.
Other people won’t see your UC as you do. Your friends and family will offer you compassion and empathy — just as you would for them if the roles were reversed.
If you let go of fear and allow people to know the truth, your shame will eventually disappear. As strong as feelings of embarrassment are, they’re nothing compared to love and understanding. The support from those around you will change your perspective and help you learn to accept your condition.
UC is a disease of the digestive tract. Your body attacks your tissues, creating open, painful, and bleeding ulcers. It limits your ability to digest food, causing malnourishment and weakness. If left untreated, it can cause death.
Because I kept my condition under wraps for so long, UC had already done irreparable damage to my body by the time I got on the path to treatment. I had zero options left and needed to get surgery.
There are a variety of treatment options for UC. You may have to try a few different ones until you figure out what works for you. Although it may be difficult, learning to verbalize your symptoms to your doctor is the only way to find a medication that works for you.
There are so many things I wish I had done differently. I lacked the courage to talk about what was happening to my body. I feel like I failed myself. But now I have the chance to pay it forward. Hopefully, my story can help you on your journey.
Remember, you don’t have to do this on your own. Even if you’re too scared to open up about your condition to a loved one, you have a large community of people living with the same disease to support you. We’ve got this.
Jackie Zimmerman is a digital marketing consultant who focuses on nonprofits and healthcare-related organizations. In a former life, she worked as a brand manager and communications specialist. But in 2018, she finally gave in and started working for herself at JackieZimmerman.co. Through her work on the site, she hopes to continue to work with great organizations and inspire patients. She began writing about living with multiple sclerosis (MS) and inflammatory bowel disease (IBD) shortly after her diagnosis as a way to connect others. She never dreamed it would evolve into a career. Jackie has been working in advocacy for 12 years and has had the honor of representing the MS and IBD communities at various conferences, keynote speeches, and panel discussions. In her free time (what free time?!) she snuggles her two rescue pups and her husband Adam. She also plays roller derby.