Are You Really That Sick?
Your colon is screaming at you and you can’t stay out of the bathroom. You can’t hold any food or water down. Your joints feel like they are performing some cruel black magic on you. You’re malnourished, dehydrated and anemic. Your hair is falling out and your face is puffed up like a balloon. You have literally no energy. You either can’t sleep or can’t get out of bed. There is no in between. Sometimes every moment of every day is torture. Despite all this… you wonder, “Am I really sick?”
I have been there and I know that I am not alone in thinking these kinds of thoughts. You have been diagnosed with a chronic illness by a medical professional. You have countless tests confirming that diagnosis, yet you still have those nagging thoughts. “Am I making all this up?”
We feel like garbage most of the time, so why do we question our illnesses? I think there are several reasons for this.
“You look great!!!”
I love that our friends think we look good despite how we feel. Everyone loves a compliment, right? Makeup and a great outfit can make even the sickest patients look amazing. When we hear over and over again that we look good or don’t look sick, we start wondering if we’re imagining our symptoms. We begin believing that we aren’t sick. Despite the fact that we see the pools of blood in the toilet, we can’t help but wonder if it’s real.
My Belly Doesn’t Hurt…
There are some patients who have intense pain in their abdomens because of Crohn’s or UC. But for others, that’s not where the pain comes from. During my first flare I had intense abdominal cramping, but when the doctors pressed down on my belly, it really didn’t hurt that bad. When I had my colon, I do remember a constant distinct burning sensation… but beyond that, the only pain I had was in my joints when I was tapering off my medications and when I was actually going to the bathroom. Bathroom visits were always extremely painful. Unless I was experiencing joint pain or using the bathroom, I wondered if I was actually as sick as I was.
I Still Have a Steady Job…
I know that not everyone with IBD can keep a steady job… but there are several who do! I was one of them. I could go to work most days and on the days I couldn’t, I had the benefit of working from home. There are a lot of patients in the hospital… I reasoned, So I can’t be that sick. But I was. There were some days I couldn’t stay out of the bathroom. I had incidents where I had accidents just driving to work. I was always tired and had to be careful what I ate. But, I could still work… so I thought, maybe I’m not really sick.
Do I Really Need Surgery…?
Even leading up to surgery I questions whether or not I was really that sick. Here I was walking around and acting like a real human. I wasn’t too weak to get out of bed and my abdomen wasn’t burning at that particular moment in time (probably because there was nothing in there for my colon to even attempt to digest). I remember on the morning of my surgery, the nurse handed me an enema to administer. I did it and instantly went running to the bathroom. The pain, burning and urgency were unlike anything else. It was awful. I wanted to die. It lasted for what seemed like an hour. When I walked out of the bathroom, I looked at my husband and said, “I have to do this. This is my only chance at a normal life.” Shortly after that I was wheeled off to surgery.
Yes… You Are.
Whatever the reason for our symptom or illness denial, one thing is certain: we aren’t alone in thinking these things. We aren’t crazy. We aren’t imagining our symptoms. Our doctors have probably confirmed our diagnoses time and again. We are sick. But the important thing to remember is that we are NOT alone in our illness. Support is out there.