For some of you, World IBD Day was the first time you found out I had Crohn’s Disease. The minute I posted about it, I simultaneously felt: “oh no, delete that immediately” & “do not touch that post, you just spent your entire lunch hour pouring out your soul.” I am happy I kept it; it is so clique to say how freeing it can be to share your feelings, but that feeling was realized for me. So, as homage to that post, here is another version if you missed it.
Happy World IBD Day! Pictured above is me in mid-April of this year, getting my 10th colonoscopy. I was diagnosed with Crohn’s Disease in the fall of 2007 – my senior year of high school. The symptoms came out of what felt like nowhere, and I continued to ignore them for months hoping it was a stomach bug. I was incredibly embarrassed. I eventually I had to tell my parents when I could no longer hide the cramps and pains. I don’t remember much besides occasionally throwing up in the morning and rushing home from school, sprinting in the front door to the nearest bathroom. After consulting a few doctors and since being diagnosed, I have been in and out of the hospital, seen numerous medical professionals, tried and failed most treatments, and suffered from some frankly painful and consuming side effects. While I don’t feel defined by the disease, I know it is time to actually acknowledge what happens in my daily life.
My condition goes up and down, which is why I seem fine some days and distracted others. I once spent a full year without one symptom. Conversely, I was also once hospitalized because my hemoglobin count (blood) was at 6.5 g/dL when most healthy women maintain levels between 12-15 g/dL. That particular incident resulted in a four night hospital stay consisting of two blood transfusions, two iron transfusions, a colonoscopy, and no food from Friday until Monday, and lots of medication pumping through my IV.
When I wrote this in May, I’d spent roughly three weeks of the year being what I consider ‘healthy’. I dropped 16 pounds in January and stopped seeing most of my friends for a number of reasons. It pains me how many events I have missed due to Crohn’s. I have made up countless excuses and lies in order to avoid making people feel uncomfortable, instead of just taking the time to explain my disease and my needs. I don’t regret how I have handled it, but I do wish I would have had an outlet to assist in coping, instead of always acting like I was completely healthy and normal.
Through this whole journey, I have achieved everything I have set out for, from passing the bar, to recently summiting a volcano. I’ve learned so much about myself and I’m proud of what I’ve accomplished. I couldn’t be more thankful for my loving and accepting family who have been relentless in helping me explore new treatment options, who have listened to me cry and scream in frustration, and also be there for those emotional and scary appointments or treatments; to Alex for providing my daily support and caretaking while having to balance his own life and wellbeing; to Henry for laying in bed with me most of the winter; and to those close friends who have cancelled what I am sure were much more fun plans and sat at home with me.
So many people are so surprised to learn something is ‘wrong’ with me, (besides having a sharp tongue and being too blunt), which is one of the frustrating parts of an invisible disease. If I have learned anything from my experiences with Crohn’s it is that you never know what someone is going through, no matter how great things look on the outside. Going forward, I promised myself I would do more. I would educate my friends and others about what I need, I would be an advocate for those in my autoimmune community who can’t have a voice right now. But first, it starts with me figuring out my best method of doing so.
So, what I initially asked was: if you know someone who suffers from an autoimmune condition please do your research and ask questions, because these conditions are greatly misunderstood by the public. We all have our personal struggles, but it is important to be kind, listen, and appreciate what you have. Many of us on social media envy another’s life or situation, however, I am hoping this reaffirms that appearance is not always reality. We are all human, and shit happens. Literally.