support is gold

I’ve been spending a lot of time recently thinking about my support systems and what it means to be supportive of someone in need. I’ve had flashbacks to the moment the doctor called as I was packing for college to tell me “your preliminary test results show you have crohns disease”. Although my support system started long before then, this moment is when my army went to battle for me. It began with googling to see what crohns was and went as far as changing lifestyles to accommodate this new disease in the family.

When you are diagnosed with a chronic illness it feels like a death in the family. I know that is extreme, but that is what it felt like for me. A part of me died that August day. Life as I knew it was forever changed. Looking back on it, I am honestly blessed that I was given this disease. I truly believe that god gives his hardest struggles to his strongest warriors, and that’s what living with crohns has made me; a warrior. They say that “it takes a village” and I have found that this statement certainly applies to my life and my crohns family. My crohns family ranges from my husband, my family, my doctors, my friends, fellow IBD warriors, and sometimes complete strangers. So many people have played tremendous roles in supporting me the past 6 ½ years. . The examples of how total strangers have supported me usually involve restrooms. There were countless times that I would be standing in the long obnoxious line at the womens restrooms where I simply would not make it if I had to wait in the line. To all the people who kindly let me go in front of them without any hesitation when I showed them my emergency restroom card; you saved me from more embarrassment and pain than you know. I used to be that girl who would ask a total stranger if i could stop and use the restroom in their house, and without hesitation, most would let me. Being able to get support and advice from fellow members of the crohns family is one of the most comforting parts of support. Simply to know that there are other people out there who, like you, struggle with similar situations is comforting. We are able to offer each other first hand advice and share experiences. This support is golden.

Support comes in so many different forms. It can come in the form of laying on the bathroom floor with me as I screamed in pain, which was an every night occurrence for years. Support can be given by coming to the thousands of doctors appointments I have been to over the years. Support is squeezing my hand as the doctors drew countless tubes of blood and playing board games with me during my all-day treatments. Support comes in the form of sleeping in hospital chairs with me in the hospital because you didn’t want me to have to sleep alone. Support is coming to the hospital before the workday started, or even better, spending your day working from hospital cafeterias or waiting rooms just in case I was awake that day and wanted to go for a walk or watch a movie with someone. Support are the people who would get into fights with nurses because they weren’t bringing my pain meds fast enough and they couldn’t bear to see me in pain. Support isn’t only visible on the bad days, but of course means being there for the good times as well. Simply calling and checking in to see how I was feeling that day shows you care, and all those calls have always been appreciated.

Crohns is always on my mind, whether Im actively thinking about it or not. It has become a part of who I am the past 6 years and in turn has become a part of my entire network of supporters. Sometimes the best kind of support that I crave is simply not talking about this shadow called crohns disease that tags along with me everywhere I go. Reminding me that although it is part of who I am, it does not define me and never will.

To anyone who has ever done any of these things for me; I love you, and I promise to pay it forward.

C