Last night, I sat at home preparing for another colonoscopy. I was only allowed to consume clear liquids yesterday and drank what seemed like a bottomless bottle of Gatorade mixed with Miralax for dinner. Let me just tell you, if you ever want to enjoy Gatorade again… don’t drink it for a bowel prep. I’ve laughed, cried, gagged, slept, and spent a lot of time in the bathroom this weekend. To be honest, this is the hardest part of going in for a procedure. I mean, I’m anesthetized during the whole thing. If I can just make it to the appointment, I get to wake up to answers and FOOD!
Today I go in to the hospital for another scope… my 6th to be exact. That’s 4 colonoscopies and 2 endoscopies since 2012. Obviously, I’m not exactly thrilled about this but I do appreciate that these procedures allow me and my doctor to make important decisions about how to proceed with the treatment of my Crohn’s Disease.
It is too early to expect results from my Entyvio infusions, but it is also important for us to determine and monitor the severity of the inflammation and narrowing in my digestive tract. There is one narrowed portion of intestine that we have been monitoring for quite some time. My doctor is making every effort to minimize the need for additional surgery, but given the level of pain and discomfort I have been in… it’s time to check in again.
I share a lot about my health here online, speak candidly about it in everyday life, and am generally an open book to all who ask questions. After years of coping with medical conditions that come with symptoms similar to a never-ending urinary tract infection, pain with sex, cramping, diarrhea, constipation, bloating, and gas… you begin to lose the ability to feel embarrassed discussing just about anything.
In fact, these things become so common place that you begin to learn how to talk about them in a way that others can understand. It’s hard to expect someone who can’t physically feel your pain to fully comprehend it. However, that’s exactly what raising awareness is all about. I share my story so that others may learn from it.
Today marks the beginning of Invisible Illness Awareness Week and that’s exactly what I want to talk to you about. If you don’t personally know me or read this blog, you wouldn’t know that I suffer from multiple illnesses. That’s because my brain, immune system, digestive tract, and bladder are the inflicted parties. You can’t see pain, nausea, anemia, diarrhea, constipation, and fatigue… but they’re just as real as any other physically evident symptom.
Unfortunately, it can be more difficult for those suffering from an invisible illness to get assistance or understanding from those around them. Nearly 1 in 2 Americans are coping with a chronic condition of some sort. 96% of those conditions cannot be seen by the naked eye. If you don’t suffer from an invisible illness, there’s a pretty good chance that you know and love someone who does.
Using statements such as “you look fine,” or “but you don’t look sick!” are a very effective way to alienate someone who suffers from a chronic illness. I’m really glad that I don’t always look half as bad as I feel… but for some reason, we live in a society that feels the need to SEE pain in order to believe it exists.
My invisible fight is one that waxes and wanes, but never seems to end. Sometimes I’m writhing pain and other times I can have a wonderful day of feeling well. I have mornings that I jump out of bed ready to conquer the day and have entire weeks of fatigue that make showering seem like a hard day’s work. I go into the hospital for periodic infusions, feel like a human pincushion, give myself injections, and carry a pharmacy in my purse. I know that I’m not alone in this fight. There are many others out there like me. Some are advocating for others and some are too afraid to speak up.
I fight for awareness. I fight for others. I fight for myself. I fight so that maybe we can continue educating others and that one day we may find a cure.
What does your invisible fight look like?
What is one thing you wish someone understood about your health?