While IBD is generally thought of as just a digestive disorder it also has a barrage of other symptoms. Why don’t we talk about one that not many people think about? The effect it has on your brain.
That’s right you heard me. IBD EFFECTS THE BRAIN! It causes what we like to call brain fog. Do you ever walk into a room and forget what you went for? Imagine feeling like that all the time. It can range from mild things like forgetting where you left your keys to severe like forgetting words. I have literally been mid conversation and could not think of the word residue. Not a common word in everyday conversation, but in the medical world it is. During my worst days I am sometimes afraid of being left alone. The anxiety you feel when you have days like this is indescribable. You feel crazy. You feel like you can’t do simple things like have a conversation anymore. I am a highly educated woman who has spent most of my life speaking in front of crowds, now I can’t even speak to my family without searching for words.
Many people with IBD experience confusion or memory issues as well. To the point where if you don’t write it down it didn’t happen or was not planned. I’ve mentioned that I’m a nurse. Try doing that job with brain fog. It takes every ounce of energy I have to focus and do my job correctly and safely. It is mentally and physically exhausting. And sometimes scary as hell.
While most attribute brain fog to nutritional deficits or medication side effects, there could be another cause. In recent studies it has been shown that certain autoimmune diseases such as Crohn’s and Colitis can actually reduce the amount of white brain matter mass in certain areas. These areas are typically areas that sense pain or focus on emotional response. It is really no wonder that we feel like we are losing our minds most of the time. We really could be.
Along with brain fog and confusion many IBD sufferers also experience anxiety and depression. It does not help that most of the time this is the diagnosis we get before we ever figure out what is actually wrong with us. I was diagnosed with depression at 14 and told I had anorexia nervosa because I wasn’t gaining weight and had multiple vitamin deficiencies. Gotta be crazy right? Can’t have a sick teenager on our hands. The joke is usually on us though because having a chronic illness is depressing. Never knowing when a flare up will hit or when and if you will be able to get out of bed and go to work or take care of your kids is nerve wracking. Another kicker is that it is thought that stress can cause an autoimmune disease to step out from the shadows, it also is a leading cause of flare ups. It’s a lose, lose situation when it comes to mental health and autoimmune diseases. As if we didn’t already have enough worry, our mental health is also put through the wringer.
I am a strong independent woman. I am an extremely hard worker, and I even like to think that I’m pretty smart. This disease is threatening to take all of this away from me. It threatens to take our identities, what makes us who we are. The only thing we can do is fight. Fight like hell to keep that little shred of yourself. The laughter, the joy, the precious moments with family and friends. Chronic illness is a war with many battles. Sometimes we win sometimes we lose, but losing one battle does not mean we will lose the war.
So let me say again, CHRONIC ILLNESS IS DEPRESSING. You are still yourself, but you’re not exactly able to be yourself. It’s scary. It’s always unknown. It’s HARD. Like will I wake up tomorrow and go to work or will I wake up and go to the ER for something that means emergency surgery? But we still wake up and we still fight.
We are depressed, we are anxious, we are confused, and we are angry. We are fed up that our invisible illness is not taken seriously. That we are looked at as lazy not caring individuals. I say enough. Let’s change our image and how people perceive us. We fight our own bodies every day. We are strong and competent people. Let’s tell the world that we are here, we matter, and we will be seen!
The Truth about Crohn's Disease 