"Out of suffering have emerged the strongest souls": Gifts from my IBD
‘Tis the season of giving, but in the hustle and bustle of the holidays, it is important to reflect inwards and give thanks for gifts from even the most unlikely of places. Some of these may even be something positive that has come as a result of having IBD or an ostomy.
Before you panic or get angry at this sentiment, this part is important: We are all at different stages of our diseases and surgeries. If you don’t identify with all of these positive aspects, don’t fret. If you are feeling like the positives aren’t coming and you’re stuck entirely in the dark, please reach out. There are so many amazing women in our organization who are incredibly supportive and can be a strong shoulder for you to lean on.
A voice. Some of us start life knowing how to advocate for ourselves and some of us find that skill after an IBD diagnosis or ostomy surgery. Others (me!) are still working on finding our kind (nurses, doctors, and administrators are human beings and deserve our kindness regardless of the situation), yet assertive, voice when it comes to advocating for ourselves. When facing chronic illness or a life-changing surgery, we will need to be or become our best advocates. I personally am still terrible at this, and struggle to advocate for myself. I am lucky to have some amazing friends in the GWG community who give me a push when I need to stand up to my health care professionals. Still, I’m learning how to use my own (quiet) voice and slowly becoming more empowered through doing so.
A think skin, mentally and physically. Chronic illness is chronic (duh). At diagnosis it is common to feel overwhelmed, possibly embarrassed, and in a lot of emotional and physical pain. As time goes on living with IBD or an ostomy, we learn how to be more confident with our bodies, how to manage all of our treatments and appointments, and how to cope with pain. This is absolutely not to say that these feelings won’t disappear (we all get overwhelmed and stressed from the pain), but they may rear their ugly heads less and less over time and with experience. You may empathize with the phrase, “I didn’t know how strong I was until I wasn’t given a choice”.
Real relationships. A lot of posts in the forum discuss losing friends, spouses/partners, relationships with family, etc. What we don’t often discuss are the relationships that we gain through our unique struggles. It may not be obvious, it may not be right away, and it will most likely be a painful process (don’t forget about that thick skin!), but chronic illness weeds out the people in our lives that aren’t there for the long haul. Without my Crohn’s’ disease, I never would have met my best friend, a fellow Crohnie who helps me through this lifestyle and is truly my sister. I’ve found that my husband is truly my mountain, and no matter how often I lean on him, he won’t falter. I also learned that there were people in my life who weren’t meant to stay, and this hurt. But with time, we will all find our people- and don’t be afraid to decide that some people aren’t right for you.
Kindness and understanding. Something we quickly learn when faced with diagnosis or surgery is the look of someone facing the same. Whether you are new to the IBD/ostomy world or a seasoned veteran, having compassion for others is a pretty immediate instinct that kicks in. I have found that some of the most compassionate people I have met in my life are those I met after my diagnosis, which only made me want to pay it forward more and more. There’s a reason why Girls With Guts quickly came to be described as a “sisterhood”- we have a kind of love for each other that’s hard to find.
Pretty sweet medical knowledge. Anyone else watch a medical show now and cringe when you hear something wrong or get excited when you know exactly what they are talking about? Anyone’s primary care physician ask them questions about IBD or their ostomy, maybe for the benefit of their other patients? Anyone else feel confident explaining their disease, their surgeries, and their treatments to others? This is one of my favorite gifts that my Crohn’s disease has given me. It is empowering to know your disease, know your stoma, know your triggers, and know your own body, which is something healthy people often don’t have the opportunity to experience. (It may also mean that you get text messages saying “what would make my poop green?”, but hey. What can I say.)
If your holiday has passed, or if it is quickly approaching, we wish you a healthy and happy one! No matter how busy it gets, don’t forget to be kind to your bodies and minds!
Casey Flancbaum was diagnosed with ulcerative colitis at 22, which ultimately was changed to a diagnosis of Crohn’s disease the next year. She found the GWG organization and forum during a late night search for a support group geared towards women and is so grateful for the online community that she is now a part of!
Casey holds degrees in Music Performance from the Crane School of Music and University of North Texas, and is currently an active performer and teacher in the DFW area. In her free time, Casey loves to cook, garden, and spend time with her amazing husband, Samson, and three adorable fur kids, Jackson, Roxy, and Roscoe!