People cross paths in our lives—whether in person or virtually, for a reason. I honestly believe this. Each relationship, friendship and interaction has meaning. In the past week, I’ve been intrigued and almost taken aback by a few interactions that I just had to share with you.
I was at a bridal shower with 15 women. Ironically, out of that group two of us battle Crohn’s disease and one woman’s husband has it. First off, scary how prevalent inflammatory bowel disease is becoming. Second, I was enamored by my lunchtime conversation with a woman who was diagnosed with the disease more than 40 years ago. She had heard about my blog and brought up the fact that she too has Crohn’s disease, and was diagnosed when she was only 17 years old. Now in her 60s, having raised four healthy children, I had a million questions I wanted to ask her.
Her attitude about Crohn’s inspired me. She acted almost flippant about the whole thing. She can’t remember how many bowel resection surgeries she had, she is on no medication, eats whatever she wants, didn’t pass on inflammatory bowel disease to any of her children and had a successful career in nursing. Damn, this woman is my new hero! Hearing her perspective and how casual and comfortable she was with sharing her story gave me hope that as I grow with my illness and get to be her age that I too can be like her someday.
A few days passed and I noticed on Instagram that I had four “unapproved” messages in my inbox. I hadn’t seen the notifications and just happened to come across them. Each of them was from a female with Crohn’s…each pulled at my heartstrings. Teens, prospective moms, pregnant women and newly diagnosed girls in their 20s…all asking ME for help. I was holding my son when I came across these messages. My eyes filled with tears. I felt a sense of accomplishment and heartache at the same time. I want to share one message with you from a 24 year old named Emma, from Spain:
“Hello…I don’t really know how to start or even if I will ever get a reply, but here it goes! I have just been diagnosed with Crohn’s disease and it’s turned me upside down and I’m really struggling to get my head around it all…24 years old with a lifelong illness.
How did you cope? What is everyday life now actually going to be like? How long did it take before you started feeling normal again? I just can’t seem to stop crying at the moment, I know I need to be strong…but, I don’t feel like I can. Anyways, sorry to bother you! I really do hope you reply. XX”
When I read that message. It brought me back. It brought me back to the day I heard the words “you have Crohn’s disease” at age 21 while in the ER at my hometown hospital. My mind raced back to being a young 20-something now carrying the burden of knowing that for the rest of my days, I would be fighting an invisible, chronic illness that would bring about a great deal of pain. Pain I had previously experienced without any answers, but pain that was only the tip of the iceberg.
I immediately wrote back to her and let her know that the diagnosis is the hardest part of the journey. When you’re told you have a disease—for which there is no cure, and you are so young…it feels like you are suffocating. You can’t even begin to gather your thoughts because there are so many unknowns. You feel so sick and so weak, the thought of having enough stamina to fight for feel good days seems nearly impossible.
While the disease will always be a part of you—who YOU are, changes. You will find an inner strength that is ignited. You will be able to gather perspective and find comfort in helping others. You will come to realize that while you have Crohn’s, it’s not your identity. It doesn’t need to dominate all your thoughts and all your being. Yes, it’s going to be a part of you for the rest of your life, but it’s in your hands to take all the good and all the bad and make it your own story.
I’m here to tell you—you can get married, you can have babies. You can travel. You can do it all. While the disease will hold you back at times, you don’t have to limit yourself from enjoying all the beauty that life has to offer. Ask anyone with inflammatory bowel disease and they will say the same thing. It’s an awful, debilitating disease that’s hard to handle—but, at the same time you will learn so much about yourself, those around you and how to overcome all of life’s hurdles. Having IBD isn’t a death sentence. Nobody wants it, it’s not fun…but you can live with it. You can thrive and be whoever you want to be, and do whatever you want to do.
The flare-ups, hospitalizations, pokes and prods, tests, side effects of medication, surgeries, etc. are going to be tough…but, in time those moments start to blur in your memory…and each time the disease brings you down, it’s nothing new. You learn what you can tolerate, when you’ve pushed too hard and when you need to take a break and slow down. You will be comfortable communicating with those around you and explaining how you are feeling and what can’t be seen with the naked eye.
And someday…maybe we all can be like that amazing woman I met at the bridal shower.
3 thoughts on “Seeing Crohn’s disease through the eyes of others”
One of the things that inspired me to write about my illness was how comforted I was to read someone else’s story online when I was first diagnosed. My tumor is so rare it’s quite possible I would never meet another person with it if not for the ability we have today to connect through google searches and hashtags. It’s great when we can share our stories, whether online or in personal conversations. It takes the fear away when we know we’re not the only one.
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Totally agree! So glad you have been empowered by sharing your unique story.
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