This is a very difficult one for me to express and truly the worst part of my expedition to a diagnosis. In the short term- it sucks. In the long term it can become debilitating if you allow it to be. When you start down the road of any chronic illness, for you, it is uncharted waters. No matter what you are told by the ‘experts’ it is still new ground for you. I lost a huge part of my identity during this process of being diagnosed. Frankly, that really angers me.
The first word that immediately comes to mind is ‘lonely’. Crohn’s is an ingenious disease due to its innate ability to pilfer control of your body, your mind, and if allowed, eventually your life. Crohn’s is what I term, “a silent disease”. Not a lot is known about it; you cannot see it or touch it; there is very little public knowledge of it; even your doctor can be disturbingly oblivious to it. This all adds up to you, your Crohn’s and your loneliness because no one understands what you are going through before, during or after diagnosis.
I have never felt so alone in my life. Oddly, I was not frightened of what was happening to me, but I did fear that I would eventually be told I had cancer of some sort. Up until the last month before my resection, I never had a feeling of dread. I believed in my medical team because they’d convinced me that they believed in me. However, there were other outside influences; people that I was not feeling. Being overtly perceptive, such as I have always been, turned out to be a huge burden for me to shoulder. In all honesty, this still effects me today. The one consolation that I have, and by God I wear as a badge of honor, is that both my surgeon and my gastro doc, apologized to me just after the bowel resection, “…none of us knew just how sick you really were, Brandee.” That does not make up for those around me who doubted me, but it is one hell of a snap back at their ignorance. I can only hope it was received as a lesson learned- not to be repeated by them. More importantly, it helped to restore a bit of my sanity.
*Before diagnosis, I spent years being afraid to allow other people to drive because I might need to quickly find a bathroom. Bathroom fear can throw you into a panic attack if you cannot get there fast enough or know where every bathroom along your route is- it can get that bad. I spent years starving myself or eating safe foods like cheese, to avoid the bathroom fear and the embarrassment that someone might catch on that I, (gasp) had bowel movements. Something a lady never reveals. As my fear progressed and the hunger would overtake me, I spent almost as many years forcing myself to throw up food I had just eaten because the fear of having to go to bathroom while I was on the job or out someplace, was too much for me to handle. Keep in mind that I did not know what was wrong with me when I was doing this and I felt it was my only option to lead a normal life. It was stupid and I should have never have never started it under any circumstances. *Do not try these methods yourself. It is not the answer and bring with them a whole new variety of health issues. Withholding food and/or purging will make you very sick. Long term usage of these methods can cause serious physical issues and have the potential to kill you.
The Default Female Species Diagnosis
When I first became seriously ill in November of 2007, I went to my family doctor, whom I’d seen only a couple of times for general checkups, and told him of my incredible pain, intermittent fever and reoccurring rash. Without even examining me, he looked right at me and said, “I think that it is time you accept that you are going through menopause.” I honestly wanted to lay him flat. Stranger things have happened, but I am way too young to be thinking about menopause. I grabbed my purse; went back to my office and found a real doctor- Dr. East Coast. He listened to me and took immediate action.
That infuriates me to this day- that because I have a uterus, automatically it’s a female or psychological issue. I would run into this ‘obstacle’ twice more over the coming months. Clearly, 8-12 years to earn a medical license does not make you intelligent by default.
Friends and Family
My family has never been anything but supportive. My husband went to every appointment and every procedure; he never left my side. My best friend stood beside me working tirelessly to find out what was wrong with me. She never once faltered nor questioned me and continues to be a driving force in my daily life.
But… there are those that were important to me that did question if I were truly ill. One person actually tried to label me a ‘hypochondriac’; doing so with absolutely no history of my ever being ill before other than common colds and I had the flu once. Additionally, virtually everyone knows me as being a go, go, go kind of person. Not a bed-bound, poor me complainer. And I would have been more willing to drink antifreeze than take any sort of prescription medication. The actions of that one person changed the course of how I’ve looked at people since. How someone so close to me could even entertain such a thought is unconscionable to me.
I’ve learned to not allow my relationships to hinder my life. So, someone does not believe in me… that is their issue to handle. I could not allow the ignorance of others to adversely affect me during the dark days of fighting for my life. It does not take long to find out who your true friends really are.
Starvation- Seven months of starvation brings with it a whole host of mental issues. I discovered that a person who dies of starvation is not hungry. In fact, after approximately 4 weeks, I did not feel hunger for the next 6 months. Oddly, I missed chewing! I wanted to chew and taste. However, as a survivor of near starvation, I did not come out of it unscathed. I have mild short term memory loss, and suffered kidney and mild liver damage. Thankfully, the liver is a very forgiving organ and has regenerated itself to full operation. The left kidney was not as lucky, but I am told that the damage is mild enough there should be no lasting effect.
Short Term Memory Loss- Oh, if there was one thing that I could change, that would be it. There are still days where I feel that my intelligence has dropped dramatically and it breaks my heart. For my entire life that has been the one constant; the one definitive characteristic that made me ‘Brandee’. My chosen career depends on my intelligence; being able to think quickly, retaining minute details and to be able to identify faces on sight. I am not sure if I am ever going to be able to go back to doing what I love and that terrifies me because it is all that I have ever wanted to do. But, I am working on it. I am working through it. I’m not counting myself out. I certainly did not lose my pride nor my stubborn characteristic.
Before and during the diagnosis process, I sucked it up and got through it. Post-diagnosis I continue to do all I can to educate anyone who gets within earshot of me. It is my place to bring awareness if I ever want to make a difference for those with Crohn’s Disease. If you’ve got it, welcome to the club and get busy. Repair your mind: Fuel your life with the fear of your disease- turn it around and hope that within your lifetime, you’ll have assisted one person in reaching diagnosis 1 day earlier than they would have had you not crossed their path.
Other popular questions I will address in upcoming posts:
How does Crohn’s Disease affect your relationships?
What do you do during a flare up?
What is it like recovering from small bowel resection?
Does remission from Crohn’s Disease mean you are symptom free?
Reminder: This web site does not give medical advice. All content is based upon personal experiences and links to news reports. If you feel you may have any health condition, I urge you to seek immediate medical attention. Please use this site responsibly.